Hi all,
I hope that I remember what ya'll wrote so that I can hopefully touch on all of it. Sure do hope so.
My hubby built me a thing to keep the sheet & blankets off my leg because my insurance wouldnt pay for me to get one, which doesnt surprise me---I guess that its considered a luxury.
I found another great website about crps---its rsdhope.org they also have tons of information about it. I even printed out some of that to show the doctor but hes not interested in that at all---not sure why. I dont know if its because I found it on my own or that I wont let him talk me into that stupid SCS.
I dont know if I said before or not but I had rsd in my right ankle 7 years ago. Went thru the casting & the nerve blocks---the last one I had made my toes forever numb in my right foot, but atleast I was able to walk. Then I think that it spread to my already bad back & then my left knee, so obviouosly my health over the past 7 years has gone down hill.
I read on the rsdhope.org website & in neurology now how nerver blocks for crps are the worst things that you can do, besides that Ive already had 14 sets of them & Im not having anymore. The first doc that did the nerve blocks told me that I shouldnt have anymore than 3 & he did 7 of them. Guess he forgot what he told me. lol lol
I also know 2 people that have the SCS & they are against it big time. One is one of the nurses that come to my house, she said that she would rather leave it implanted in her rather than go thru the surgery of having it removed & it hasnt worked in a long time. The other says that it makes him flop around like a fish---& thats one thing that I definitely dont need.
I also meant to ask you all if you have spasms? I get them so bad that it makes you want to scream. I get them more frequently when it rains.
I live in Tn & Ive typed in my zip code trying to find a doctor that specializes in crps----the closet one---right now I cant remember where it is, but I know that its not close. Riding in the car is shear agony for me. Hubby made me a cushion for my leg, so that the bumps arent as bad, & I ride in the back seat, havent been in the front seat since the morning of my accident.
I know that amputation is drastic----Ive been doing research on it & it says that its the worst thing to do, but sometimes I wonder if the phantom pain is as bad as what I go thru especially on rainy days. I wish that I could just remove my leg & put it in a corner for being so dang gone bad & causing me so much pain, but I know thats not realistic, but sometimes I sure do wish that I could.
I really appreciate the prayers & the well wishes from all of you, I cant tell you how much it means to me. I just wish that my family would be offering the support to me that ya'll are. I cant tell you what that would mean to me. I just dont know why they dont understand. Before this injury we all talked on a regular basis---whether it was on the phone or email, but now its like pulling teeth from an elephant---it just doesnt happen. Maybe one of these days they will surprise me & actually call to see how Im doing---not that Im going to hold my breath for that to happen---I would probably turn blue first.
I hope that ya'll had a good weekend & that you had good weather. NO rain today but chilly.
I guess thats about all I know for now, I really hope that I touched on what everyone wrote---if not Im sorry & will go back to see who I left out. Hope to hear from you soon.
Thanks again.
Janet

Dear Janet,
When the pain is unbearable, it feels as though there is no where to go to get away from it..I am so sorry that your pain level is so high....

the loneliness of not being understood is also painful...

When you get your power-chair, it will give you some sense of control and mobility, and hopefully bring you some happiness, as you'll be able to take a 'walk' with your hubby now and then, when your having a low pain day..I hope some of your days offer relief with less pain than on other days...

There is a 'tent' that can be ordered online...I'm sorry I don't know the name of it or the website, but someone else on the board might..it elevates the sheets and blankets at the base of your bed so that you don;t feel them directly on your limbs...

Have you had any lumbar blocks, that might give you some relief? or infusions?
Everything that I've read discourages amputation of an RSD limb..
I hope you are able to continue looking for a doctor who will pursue ways to relieve you of your pain...I know it's hard to find the right doc but please keep trying..or get some help in trying to locate one..the RSDSA website lists doctors that specialize in RSD...
I know the conflict of which way to go is so hard..

I'm thinking of you and sending you many heartfelt thoughts of relief for you..

please don't give up..something that could help might be just round the corner..
hope4thebest

Dear Janet -

I too am glad that you have finally found us. You are tenderly embraced into our community. And has been said, we're all here to help.

And as to your question on the difference between RSD and CRPS, while for most people, they are the same thing, you might want to check out "What is CRPS?" http://www.rsds.org/2/what_is_rsd_crps/index.html

hope4thebest just mentioned the RSDSA website, which is where I got the page I just mentioned. It's homepage is at http://www.rsds.org/index2.html and there's much on there to look at. Better yet, drop an email to their patient representative at patient.representative@rsds.org Explain your situation and where you live. Within hours an email will go out to thousands of people across the country, asking if they know of good pain doctors in your area. I would also specify insurance you've got and the problems you have had with it. No guarantees, but they might have some ideas for you as well. (The guy who runs the show is an MSW and very creative.)

Given the brittleness of your bones, I'm surprised that no one has raised the possibility of infusions of drugs in the pamidromate class with you, specifically something called Zometa, where not only is it of considerable assistance with RSD in many people, but it was developed specifically to prevent the loss of bone tissue in patients with mutiple myeloma (bone cancer). The point of suggesting it to you is that while your insurance probably wouldn't cover it for RSD/CRPS, it would be much more likely to pick it up in light of your severe bone loss. Here's an article on the use of pamidromates for CRPS in general, again from the RSDSA website: "Efficacy of Pamidronate in Complex Regional Pain Syndrome Type I," Robinson JN, Sandorn J, Chapman PT, Pain Med. 2004; 5: 276-280, free full text at http://www.rsds.org/2/library/articl...e_Robinson.pdf For more of the pros and cons (perhaps Pamidromate vs. Zometa) you can look at the very recent posts nos. 33 & 35 on another thread in this forum at http://neurotalk.psychcentral.com/sh...d.php?p=571350

Know that you are in all of our hearts.

Mike

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

(The following was directed to me. I don't know how to make it appear ghosted so that readers know it is a quote. Sorry. My answer is below.)

__________________________________________________ ____________
His machine is FDA approved for the treatment of pain.

He has conducted some small studies, some that he funded himself. Those are described in the book. He has been published in medical journals:
1. Podiatry Today, November 2000, "RSDS, disgnosis and successful treatment" and
2. in the American Journal of Pain Management, 2002 Jan; 12(1):31-34, "Effects of Sympathetic Therapy on Chronic Pain in Peripheral Neuropathy Subjects."
In addition, he has spoken at many seminars.

Large scale, double-blind studies require a lot of money, and it usually goes to institutions, not to lone doctors with a non-profit organization to accept the funds. He does have grant writers looking for funds.

Patients usually arrive with a diagnosis from other doctors they have seen in their efforts to find out what is causing their pain. He bases his treatment claims on his small studies and on the thousands of patients he has treated for the last 17 years. He never says "cure." He says "remission."

* "electromagentic stimulation of the nervous system" or variations thereof can lead you to all types of info about the efficacy of this kind of treatment for various nerve conditions. There are all types of small scale studies that I found and one lengthy discussion released by a university in the form of journal article about using this type of treatment and the positive results. However, it apparently has not been followed up by those who did those small studies.

I hope this answers your questions.

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