noticed there have been some newbies showing up, so just thought i'd bump this up for them.

wow good work, and thank you for writing that paper,

I pass it on to my family so they understand RSD better, and what we go thought,

Peace
Kelly

Great work on the paper excellent description.

Jolene

Exquisite! Thank you!

Andrea, I am glad you got such a good grade on your paper but some of your information is wrong. The Spinal Cord Stimulator does not require yearly maintence. If you choose a non-recharable battery version about every 5 years you need the battery replaced. If you chooce the rechargable battery version as I did you can go nine years or longer before replacing the battery. The battery itself is also not the size of a television remote control it is a little larger than a silver dollar. That is all. It is very small. The external remote control is maller than most television remote controls. My insurance also did not hesitate to pay for my surgery all though they did require a psycological evaluation. They do this with almost all surgeries requring foreign object implantations. To make sure you will not freak out. I was also really hurt and offended by the portion of your paper that discisses the use of narcotics. That RSD people consider them in your words favorable because we get a high. Guess what I don't get a high! The reason I dont is because I am in so much pain & the fact that I only take my prescribed dosages. That my body uses all the medication. There is nothing for me to get "high" on. I am also not addicted to them. My body may be dependent on them to some degree but I am not looking for my next fix. You make us sound like a bunch of addictics. Attitudes like that is why more RSD people can't get the help they need.
Denny
PS not every doctor makes you sign a drug contract. I have never had a doctor who required that of their patients.

when i wrote the part about narcotics, and throughout my paper, whren referring to people with RSD i always called them "patients" or "those with/suffering from RSD", and would use "people" to generalize for everyone- not just those with RSD. that might not have been clear... It is very well known that those drugs are highly addictive, and are used to get high and can cause future problems if not monitored and taken directly as prescribed. I just know that I have been to see doctors in 4 or 5 states about my RSD, over 15 total doctors, in the last 5 years, and i have always had to sign a drug contract of some kind when given narcotics or opiods, or some other drug that has some kind of want on the streets. I also had a spinal cord stimulator implanted, and explanted, and have the whole thing in sterile bags from when they removed it from me, so i was going off the device that i have. i did research for 2 months for my paper, and conducted personal surveys of over 30 RSDers. So from all of the information I gathered from the personal testimonies and over 15 other various sources- websites, books, brochures, etc. what ever I stated in my paper is accurate to some degree. it might not fit the things that you have experienced personally, but I think for the most part everyone can relate to every section of my paper. And personally I don't think i made anyone with RSD sound like drug addicts. But that is your opinion, and i can't change what u think.

Denny,
I am really sorry that you did not find Andrea's research paper accurate in certain areas. While I respect your position and your concerns, I would like to address the portion that you referenced on opioid pain medication. I do not think that ANY of us here dismiss the usefulness and appropriateness of opioid pain meds as a portion of the overall treatment of RSD. I do not think that any person who suffers from this disorder judges anyone else for whatever meds they need to take in order to function and maintain as much quality of life as possible. In reading her paper again myself, I do not get any sense that her comments on opioid medications would cause the reader to walk away believing that those who take them are drug seekers or addicts.

All of us who suffer from this disease know that NO "high" achieved from any meds could justify the pain that we endure or could make us want to remain sick so as to continue to get the meds. Quite the opposite has been proven:
"Opioid medications can be effective in many patients. Physicians use these medications when non-opioid pain relievers are not effective and before considering invasive treatment such as surgery or spinal cord stimulation. (See CRPS treatment options.)� Opioids also are used to reduce the level of pain so that other forms of treatment, such as physical therapy, can be administered without causing additional discomfort. Many pain medicine physicians favor the use of long-acting opioids taken on a regularly timed, rather than "as-needed," basis. Although opioids are subject to a great deal of misunderstanding, such drugs usually can be used for legitimate medical reasons with little fear of addiction. However, tolerance can develop with long-term use and a patient may require increasing doses for pain control. This can lead to undesirable side effects. Make sure your physician is very familiar with the use of opioid drugs before taking them for pain management. The bottom line is that opioids are useful only if they help promote an increase in physical activity along with offering some pain relief and do not cause debilitating, undesirable side effects. Also, opioids must be used cautiously in patients with a history of addictive behavior."

http://www.nationalpainfoundation.or...CRPS_Myths.asp

I think that you may have lost sight of the fact that this was a COLLEGE research paper written on the subject of RSD. It was not intended to be submitted to a medical journal for other doctors or medical professionals to reference nor does Andrea claim to be a doctor. I could see how FOR THE PURPOSE IN WHICH IT WAS WRITTEN it was appropriately and well written and well researched.

Regarding the discrepancy of the SCS, Andrea also had a unit installed.
I personally do not know how many manufacturers there are of them or how many sizes, but I imagine that there could be some size discrepancy on different models or for different locations placed in the body??? This is mere conjecture on my part, but I don't know how relevant it is in the scheme of the overall topic??

I'm genuinely sorry that you felt offended by parts of her paper, but I think that if you step back and put it in perspective (it was a college English paper) you have to agree how well written and thorough it was! I do not think that her brief mention of narcotic pain meds was meant to insult or offend or degrade ANYONE. I certainly did not feel condemned by her assessment of them, nor do I believe that was her intention. I think it needed to be as objective as possible for the purpose in which it was written.

I am grateful for any and every accurate exposure that this disease gets in the general public. She had to present that paper to her class, and so there are a group of her classmates as well as her professor, that now know pertinent details of this disease and may share what they know with a few others. If we are all committed to educating as many people as we possibly can then we may save someone else years of unknown suffering before proper diagnosis. I personally commend each of us for educating to the best of our ability rather than trying to be "perfect" in our presentation. As individual as this disease manifests within each of its victims, so we each have our own individual perspective to share on what it feels like for us to suffer from it.

Also, I had to sign a standard agreement with my Pain Doc before he ever treated me with nerve blocks......and he hasn't even prescribed me any pain meds yet. It is on file at his office and gives him the right to actually drug test me at his discretion for any illicit drugs. Perhaps different doctor's insurance companies (and different states) require different legal stipulations.

BTW......to her credit......she got an A+. I think she deserved it.

Best wishes to ALL for a pain-managed night, by whatever means necessary.

Thank u! i spent a over 100 hours researching and writing my paper and many sleepless night able to take my meds so i could think straight.

Denny,

I dont agree with what you wrote about Andrea's paper.. First thing I want to clear up or say, is that I have 2 stims implanted, A spinal cord stim and a peripheral and both my generator or battery packs are SOOO much bigger then a half dollar coin. THey are bigger then the palm of my hand and could be compared to with a remote! I will post pics showin how big mine is under the skin!!

Second, I have seen 4 Pain docs and even my primary doc made me sign a contract for the drugs. It is state law in NY to have a pain clinic have a patient sign a contract bc of the narcotics being used and it protects the doctors in case the patient starts drug seeking like in the er's or other doc's.

And she is not saying anything negative bout us RSD'ers abusing narcotics... i know her personally and she has done everything to not use them and knows that if she uses them that she is not an addict and was given the meds for a reason and shouldnt have to be taken out of context for a paper she wrote!

Amber

Hello Denny

I also agree with everyone on here, for one Andrea took the time to research everything from family to pain meds and treatments from what I can see she did a great job Andrea put in a way that everyone can understand what RSD dose,to everyone besides just RSDers, I ask you how many people do you know that took so much time (and in pain) to do this?
I feel it was not just for her, to get an A+ she did this for everyone, We need more people like her to get involved
Its not just RSDers that need to understand there illness but everyone

I also had to go thought a lot to get my pain meds, I sign a paper also and every time I went in to see my Dr to get a refill on them I had to bring in my bottle and do a pee test, I was in NJ then, I do not even drink or did any drugs in my life, I also was told that you do not just become a drug accit at the age of 44, I am no longer taking any pain meds, due to they did not work for me, and I NEVER got HIGH off of them
From what I understand, if you have true pain, you do not get high off of them, and if you do then they are to high of a dose for you, or you are not in pain, that is what I been told, I was on Miss Oxxy cotton, and fetal patches, that was my choice to stop all pain meds, only due to side affects, and they just where not working on my pain, I have full body RSD

I do not know about the SCS even thou I was ask if I wanted one, I said no
I do not want that in my body, I hear that there are more pro with them
so I am not taking any changes, I do know someone that has one, and you can see it under her skin, to me it look the size of a deck of cards,

Andrea did a great job, for all of us, she work very hard on this, and I hope it dose get pass to all RSD sites so outers can read it,
I did not get out of reading it that she said we are drug seekers, we just get labeled that! she was showing the bad side of what RSDers have to go though, you are dammed if you do and dammed if you don't its a no win

Thank you Andrea for doing your paper,

Denny please take the time and reread it and please do it with an open mind,

Peace
Kelly