Janet,
My heart goes out to you.
And, I understand what you're going through.
I was T-Boned by a tractor trailer in '83. "It" started the moment I woke up the next morning. Pain like I'd never felt before, burning, you know that "Something is Seriously Wrong". Since it was an auto accident, and back then PA had unlimited coverage, I didn't have to get an OK from anyone. In '83, in Philly/Jersey, there were only a few doctors who "KNEW" what this was.
During the next Seven years, I saw literally more than 100 doctors. It got to the point that, I could interview them on the phone, so as not to waste my painful time, driving to see them. Some, were very brazen, (neurologists mostly), and wanted to put me on these meds (which I did before), but insisted well, I must've done it wrong. I just walked out of that office, when I could "tell", this doc has no clue. And, I told them too! I refused to sign their slip for my insurance. I said, if you don't know, you've got no right, to charge my insurance company, because I sure as heck wouldn't pay you!

My chiropractor recognized what I had, (from another patient), and got me in quickly, to see Dr Schwartzman, @ Jefferson, Philly. He knew. I just started crying, not because I had this monster, but because here's a Cheif of Neurology, telling me I'm NOT losing my mind!
I'm still seeing his partner.

It seems to me, after reading all your in put, that your problem, is that you don't have a good enough doctor!
I'm not a doctor.. And, I understand the drug problem in Tennessee. But, from my experience, talking to people and doctors about RSD (I also have TOS, TBI, Thoracic Outlet, Brain Injury) about four herniated discs, Sleep apnea...etc.
My one doctor supervises all my others. He had a small heart attack last year. Many people were traumatized!

So, it seems to me that your biggest job is to find that one particular doctor, who can, and WILL help you!
Write yourself a little "script" for when you call. If you've actually been diagnosed with rsd, say that. Also say that you are getting no relief, to the point of asking about amputation. (That imho, is too far) A doctor should be ashamed!

Can you get to a good hospital? Ask for the cheif of neurology. Let them do a blood test, (for drugs).
This is real, and for quality of life, you might hafto move, or travel out of state. (If you considered amputation.....)

Janet, I've had this and more for 26 years, and I'm really aggravated that you're in this position.

If you'd like, pm me, and I'll call you if you think that might help.

There is so much more that can, and SHOULD be done for you!

BTW,

I take 60mg. methadone/day
60mg. of Cymbalta/day
20mg. of diazapam.
i forget the mg, but zanaflex to help sleep.
Allegra for allergies,, so I can use my CPAP machine to sleep.
Lidocaine patches for pain where the discs are bad. (neck and low back).
and some other things for migraine, my brain, etc. (hmm, they sorta rhyme)?

So, the Methadone should clue you in.
I'm full body, and it does a decent job of keeping the pain under control.

Help is a phone call away. It's just WHICH phone call!
Let your fingers do the walking!

We're all here for you, Janet!

Wishing you the best, and (don't forget your prayers, we're praying for you!)


Pete

asb

Hi Pete,
My hubby used to drive a truck but that was before he was diagnosed with RA, now he takes care of me---which is a full time job. I really feel bad that its so hard on him especially when it rains--we both hurt.
Im glad that you got a good doctor, it sounds like you've been thru the ringer with them. Its so extremely hard to get a "good" doctor around here---Im actually surprised that my PM doc was able to diagnose me at all. I was diagnosed with rsd 7 years ago in my right ankle. The pain doc I had back then after trying the nerve blocks finally injected directly into my spine morphine, it helped me walk but I lost the feeling in my toes.
For some reason this PM doesnt want to increase my perocet stronger than the strength that he has me on now.
He thinks that opana 20 mg twice daily with the 7.5/500 perocet twice a day should be good enough for me, even though Ive told him that its not. Ive only seen him 3 times the rest of the time I see his idiot staff who doesnt know anything. I asked for something for the spasms & the swelling in my leg & thats when they told me that the doc had written in my chart that if there wasnt a siginficant change with my pain. I dont see what asking for something for the spasms or the swelling would make them automatically put me on the schedule for the SCS surgery. I know that when my back was bothering me the other PM that I had told me that a SCS wouldnt help my back & I trust him more than I do this PM doc. The only thing is that he doesnt take my insurance anymore so I cant go back & see him.
Im on other meds for my other health problems but what I listed above is the only things that Im on for pain. The opana is new but the perocet Ive been on for 2 years, at first they were giving me 2 perocets every 4 hours,then it went to 2 every 6 hours, then when I went to the PM doc it was the patch & 2 perc's a day. When the patch wasnt working he switched me to opana.
It dang near kills us to travel the 54 miles to the PM's office & thats only 1 way, then you got that plus going into town to get the meds filled, which is another 22 miles there & back to the house. Insurance wont pay for me to go out of state. So its a doubled edge sword---I cant pay for it out of my pocket as I havent gotten approved for disability yet. Even thou it says on their website that crps is an automatic for disability. I have no idea what the hold up is there. I sent them some new information so hopefully that will speed things up a tad. I fired the attorney that I hired--they absolutely refused to do anything, so now Im handling it on my own.
The doc knows that more needs to be done, he just refuses to do it because he wants that 30 grand. It strikes me as odd that everyone knows I need help---the nurses that come to my house, my pcp, the pm doc but no-one wants to do anything. My pcp hands are tired as far as what she can do. Every pain clinic around here does the nerve blocks first---or they wont treat you. If they worked it might be a different story, but all I get from them is the headache afterwards. I dont know how the pm here works but I do have yahoo messenger if that helps any. I dont have long distance on my phone so Im unable to call anywhere outside my local area.
I know that Ive said it before but I cant tell you & everyone else here how much it truly means to me that you all are so helpful to me & answers my questions. Im so used to being ignored by everyone that I ask---its like I dont exist & that I dont matter. After awhile you tend to stop asking. I cant tell you how many times Ive cried after leaving a doctors office. It takes longer for me to get into the car & ride down there then they take to see me & thats even filling out their papers.
It truly means more than my words could ever say---just know that you & everyone else here has been my savior & you've given me some hope that maybe one day my PM doc will get a conscience & actually help me. I know there are people who just want the drugs but you would think that a doctor would be able to tell the difference, but its obvious with what they put me thru that they dont have a clue. Ive told them to come to my house any day of the week & see how I spend my day----needless to say they havent done that---or would that make them human.
I know that I have rambled on enough because my hands are getting tired. lol lol
Thanks so much Pete---I cant tell you how much it means that you answered me. If you have yahoo then we can pm other than that I dont have any other way of doing that. Hope that you had a good day. Thanks again.
Janet

Hi tierd
i Pm you my cell # if you want to chat,,Causalgia 2 is with nerve entrapment,,rsd1 is without nerve entrapment,,,,,,,And I too heard a case study where a woman who had a leg amputated and the stub was so sensitive ,she couldnt wear a prothestic leg,,it was too painful,,then you also have to worry about the spread due to the trauma of the surgery of the removal of the leg,,,rsd is like a perasite..or a cockroach,,looking for a new injury or trauma to invade and set up shop,,,,call me if you want,,i pm you the #,,,,,,bobber

I really feel sympathy for all the patients who see doctors who know little to nothing about treating RSD. These doctors have never had it, have had little medical training about it, and have not researched methods to treat it. Some of them are kind, caring, and bewildered. Others are hostile, belligerent, and dismissive. Some don't even believe it exists.

In Texas, Dr. Donald Rhodes not only is kind, caring, and knowledgeable about RSD, he has had it himself, so he knows what you are experiencing. He never tells a patient, "It's all in your head." He knows the disease is real, he spent an enormous amount of time back in the 1990's researching the disease, and he found bits and pieces of research that led him to design an FDA approved machine that he has used for 17 years to successfully treat RSD. He used it to put himself into remission. It is non-invasive, does not involve drugs, and is painless.

You can find out more about this doctor on his website at *edit*

I have been treated by Dr. Rhodes. I know many of his patients. They come from all over the state, from all over the U.S., and from foreign countries. They usually learn about him by word of mouth or from finding him on the Internet. His success rate if very high. His goal is to make you pain free. He never speaks of Cures. He speaks of Remissions. That is because most people with RSD do not produce enough of two primary substances that keep the body from overreacting to trauma and stress. Some remissions may last a life time. Some may not. But with the machine, the patient can go back to Dr. Rhodes for an update and then retreat him/herself with his/her personal machine and typically regain remission.

Typically, remission is not instantaneous. The machine causes the body to produce substances that allow the nerves to heal, and that healing takes times. However, some patients see results right away, some in two or three days, some in weeks. It depends on their past history and other factors. Drugs damage the nerves, so the patient has to get off the heavy-duty narcotics to get results. Dr. Rhodes has gotten more patients than I can recall off of morphine pumps. You are way ahead of the game if you haven't had such drastic treatments yet.

Dr. Rhodes recommends that after patients begin the healing process and return home with a machine, they continue to use the machine regularly for six months to get the maximum benefit from it. After that, some patients use it every day indefinitely. Some use it only if they have flare ups. Others stop and may never need to use it again.

If you go to the doctor's website, you will find a tab for patient testimonials. If you click that, you will get a list of videos you can view on YouTube. Do not be surprised at the different ailments you will find listed there. While medical science is beginning to recognize that autoimmune diseases stem from some common underlying malfunction of the body, Dr. Rhodes figured this out long ago. As he treated patients for RSD and got better and better at it, he found other conditions also cleared up. It happened repeatedly, so he could only conclude that his machine was treating some basic disorder in the body that manifested itself in different ways. If it affected the extremities, it was diagnosed as RSD. If it showed up in certain trigger points in the body, it was called Fibromyalgia. If if affected the joints, it was labeled arthritis. Many, many seemingly unrelated conditions are basically diseases of the nerves, and Dr. Rhodes' machine treats the nerves.

If you have the means to travel to South Texas, you may want to check this doctor out. He is certainly worth considering. He is getting results and has been getting results for 17 years. He has a cadre of loyal patients who have been given back their life by him, and they are forever grateful to have found this marvelous doctor. They feel blessed. I hope you, too, can be blessed to be one of his patients.Link

Just an afterthought. Dr. Rhodes does testing that objectively indicates that you are in pain. Who else knows how to do that? You can't see pain. If your limb is not swollen or purple or black, and believe me, even that is not enough to convince some doctors that you have a problem, then most doctors have no way to determine if you are really hurting. Dr. Rhodes does. Not only can he test you for pain, but he can tell you through follow up testing if his treatments are reversing your nerve problem. This doctor is w-a-a-a-y ahead of his time. Or else everybody is way behind. Dr. Rhodes is one of those genius pioneers who is forging a trail for everybody else. One of these day he will be a household name.

Hi everyone one,
I just wanted to share some good news with ya'll. Today was a red letter day for me. I got my Jazzy & for the first time in 2 years, I was able to go down the driveway & hold my hubby's hand on the way. The only time Ive ever went down the driveway was to go to a doctor's office. I cant tell you how WONDERFUl it felt to do that. I also saw my backyard for the first time today. Its utterly amazing, let me tell you. Its like Im a REAL person again & it felt great.
It sits up way higher than the other one that I have been using for the last 7 years on & off. Its so much more comfortable than the one I had. Its like going from a old beetle to a cadillac!!! I just wanted to share the good news---this is the first good news that Ive had in a very long time. I went down to show my sister my new wheels & they didnt show any excitement for me at all, I really dont know why either. Oh well, I guess they would rather me be a prisoner in my home. I hope that ya'll had a good day. Just wanted to share.

Janet

I'm curious why he doesn't provide any scientific information about his machine/treatments on his website. There no clinical studies, peer reviewed articles, just patient testimonials. Looks like a big TENS unit to me but how would I know? There's very little information about the science behind this. After a very cursory google search on this doctor I found nothing more than a questionable website with minimal inspiration claiming a cure for RSD. I have doubts this is legitimate.

Rsdfree, with all due respect perhaps you could enlighten us all with more specifics details on how he reaches his diagnosis and claims of healing RSD.

I don't mean to hijack the thread but this type of claim just begs for more due diligence about this specific posting.
MsL

Evening all,
I hope that ya'll had a good day & that your pain isn't driving you crazy. I just wanted you to know that I started a new thread & was hoping that ya'll would weigh with your thoughts about it. Got the Jazzy stuck today--oops---shouldve known not to go that way. Am still learning how the thing works. Got it out & back to the house again. lol With more time Im hoping that I will get better at working it.
Pain is extremely high today but then when I got stuck it kind of threw me forward so needless to say it hurt like the dickens. Well thats about all I know for now---am waiting for the pain pill to kick in & do something. I go see the PM doctor tomorrow & its an afternoon appointment so it might be early evening before I can answer any replies.
Thanks again & I hope that I can get the link right--it wouldnt be the first time that I didnt get it right. lol
Janet
http://neurotalk.psychcentral.com/sh...941#post572941

Janet,
As these things go, you might hafto get mud and snow tires,, possibly chains, and after that, a four wheel drive!
I'm just teasin///// girl.!
Just know your limits.
You'll do just fine!

love to ya,
Pete

Hi All, Just wanted to update you on the doctors visit yesterday. It took longer for me to get into the car here at home than I was actually there. A quick pill count, & nothing was discussed & that was it. Wait at the front counter for my new scripts, a time for the appointment next month & that was it. The thing that I dont like about this doctor is there is NEVER anytime to ask questions or talk about anything & youre out the door. You dont see him---you see his associates & they dont know anything at all. This makes the 8th month that Ive been going there & Ive only see the doctor 3 times & all 3 times he was trying to shove that SCS down my throat. I guess that he figures that since I showed his shrink the documentation about it that Im not worth his "precious" time so he pawns me off on his staff who are not quailifed to take care of my animals let alone a person. Im sure that its going to stay that way until I agree to have that thing---which Im not, so I probably wont be graced with "presence" until I do. He overbooks his time ---Im sure for the money--because nothing else matters to him but dollar signs & this is where Im stuck until I can find someone else who takes my insurance. Heck of a place to be, but atleast I have one pain med that works---sure would be nice if I could get the perocet strengthened--that would be better than what I have now. Its supposed to rain today & thats just going to have me in my hospital bed all day in extreme pain.
Really hate rainy weather. I hope that you are having a good day---I know that its too early to tell that yet or not but. Well thats all I know for now. Hope to hear from you soon. On another subject---can anyone tell me how to add albums to my page---I would really appreciate it.
Thanks.
Janet