Ramble on, Miss Janet...that's what we are here for. My mother in law had a leg amputation and her phantom pain was horrible. Because RSD is considered a neurological disorder,I would think that your pain would be the same if not worse. I would get some more professional advice. I really am sorry that you are going through this pain and situation, it must be awful for you to consider amputation....you're in my prayers.

Cindi

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

Dear Janet,

I agree with the others - don't hesitate to get another PM doctor. Many of us have been through a lot of them. Keep looking. If it doesn't feel right then it's not. The only doctor that has lasted a long time for me is my Boston doctor at St. Elizabeth's. I have searched all over RI for a good pain management doctor and I can't find one. I'm just not going to bother anymore.

My PCP writes my pain meds for me. My husband and I have been going to him for 20 and 15 years, respectively, and we have a great relationship with him and his staff. I had one snafu with an admin asst. that cost me an incredibly painful weekend without meds - it happens. I was ready to switch to another office. But in the end we worked out a way for me to stay with him and just communicate through another asst in his office. Do you or your husband have a PCP?

Read FMichael's message very carefully. He is incredibly smart and well informed - one of the best! He gave you some great info. You may want to also read the info he provided on another thread regarding pain management books and their authors - we were writing about pain psychologists.

I really wish you the best of luck. I know what you mean about wanting to cut off the offending limb because it hurts so bad. Unfortunately, my worst pain is in my head. Can't cut that off.....I'm learning to breathe and it really does make a difference for me.

XOXOX Sandy

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

I have an opinion, for what it's worth. CRPS when first realized, either follows no history that an ER doc will comprehend for the type I'rs and if you are type II, then you likely followed surgery, have some strange surgical complication for which they only want to make sure you are not going to die in the next 5 minutes then tell you to follow up with your surgeon.

Most if not all GP's, internist and any other primary doc while having heard of CRPS a long time ago in school, would not know a CRPS patient if it walked in and bit them on the rump. Cerebrally, they have heard about it, probably never seen one of us that they knew about and sure as hell would rip up the welcome mat and lock the door if they found out that you walked into their office. They have too many other patients for which they have a handle on their problem to pursue as opposed to taking on a patient that is out of their league. Of course there are exceptions.

So, we become "chronic" patients and have the best results with those that handle chronic conditions, PM docs, psychiatrist, etc. When we have an acute exacerbation and go to the ER, we are back to square one dealing with someone who knows how to keep a gunshot pateint alive for awhile but hasn't a clue (nor wants one) on how to deal with us.

The problem is a lack of exposure for the docs that most of us see first. They simply are outgunned because the have no experience base in dealing with us other than what they have read or studied in school. They don't see enough of us!

Then complicate the process with patients that game the system (not us whom are here) for monetary reasons as well as hired guns in the PI and WC venues who not only do not understand our condition but rely on miserable publications like the 5th Ed. of the AMA Guidelines for Impairment and think we are all a bunch of nut jobs in an effort to help those who purchased their services.

Everyone here has it correct eventually in that they will trickle down to some MD who cares or knows enough to help us! At least the way the system is now, most of us can get care, of some type, that is on a varying basis helpfull. I lose sleep over what happens when and if we go to a system where care is determined from what is cheapist. Chronic and terminal patients (those who cost the system money) will sit in the back of the bus and be put out to pasture. EBM will determine that there is no proven effective care so nothing will be covered; the response will be go to Ralph's and buy another bottle of ibuprofen!

Janet
RSD was changed mostly because the descrepancy between the two,,Crps, and RSD,,,mostly the C signifies that no two people have the same symptoms and no two cases are the same,and no two meds will work with the same patients,,Alot of the meds do work for alot of us,,But we get caught up in a vortex of upping our doses, meds, as our bodies tolerance levels rises, and the pain pokes back thru,Then were forced to either up the dose,,or stack another med on top or swap out for another,,but its a vicious cycle,,because ,in the end,,the result is the same,,we are just masking the problem,,although some meds do really help,,but exercise is the best med,,but when we are in alot of pain,,Who really feels like working out along with the depression ,anger,resentment ,bitterness,,and the meds make us short and moody,,Its sounds like the rsd /crps{same thing,just a new name],,although there is crps1 and crps 2 which is causalgia,,meaning it started by a nerve entrapment,and agressivly progresses at a faster rate,,,It sounds like you are spreading,,and It appears eveident that the sudmotors and vasamotors arent working,,,I'll PM you my cell # Feel free to call anytime,,,And I see thru respect thru the group ,that alot of other well knowledgable people have waiting on me to answer you thru respect,And I appreciate that,,they are a Class act,,,,alot of them thanked you for this post,,,these people are very well educated in this realm as well,And probually are waiting to answer you as well,,,,thank you guys,,,and janet,,call me,,God has us all here for a reason,,But i do Believe he will heal us as well,,,,,,,,,,,,,,,,,,bobber

Hi Bobber,
I agree with you that this doesnt effect any 2 people the same way. I definitely agree with you that no 2 people can take the same meds & have them work the same way, but if you would hear my doctor ramble on about how a certain medication helps so & so, so it should help you. I guess hes along that thinking that maybe I should be taking the same strength of perocet that Ive been on for 2 years now & be getting relief--even though the nurses that I have coming to the house have told me that you build up a tolerance for them especially after this long a period. I have been on some pretty strong medications in the past when I had the rsd in my foot & I stopped them "cold turkey" with no side effects or withdrawels at all. I have also told the PM doctor that all I want is relief that I dont want to become a "zombie", but he refuses. The insurance that I have doesnt allow me many choices on who I can see & thats another problem that I have to deal with.
I had to wait for 3 months before I was allowed to see another ortho--which only made things worse for me, but no one seemed to care about that. I guess their theory was--oh well Janet can wait, its not as though shes dying or anything like that, she only hurts. Or Im sure she only wants the pills!!! There is a major drug problem here in Tn & the doctors all treat everyone like they are only there to see them for the "PILLS" & nothing else. If you would see what we have seen going to the pain doctors, Im sure you would fall over, its unreal!!! You have the ones that are just after the pills & its so obvious, but when I go in, they cant see the difference between them & me. I really dont understand why. When I was going to a PM doctor for my back, we saw a man run into to sign in, then run back to his car for his cane, run half way back & then started to limp when he got close to the window. Im not joking at all.
I really dont think that the PM doc's can tell whose really hurting & who just wants the pills & it really should be obvious. I went to one clinic where they did the injections & for 3 months I couldnt feel anything from the waist down, the notes from that office visit disappeared. When I called them & told them that my legs were on FIRE, they told me that they didnt do anything wrong & magically the notes just vanished---it was like I wasnt even there on that day---before that day & after that day were there, but everything else was gone.
I really appreciate everyones advice that Ive gotten on this, it means more to me than anyone will know. Its just really nice to know that Im not alone anymore, because for a very long time thats exactly how I felt.
The causalgia that you talk about, I have seen that on my office notes but it doesnt go into detail on what it is, could you explain---if you dont mind---exactly what that is?? I sure would appreciate it. Im not normally on during the week between the hours of 8-4 central time because I have to keep the phone line open for the home health to call & Im hoping to get my powered wheelchair today, along with a new mattress for my hospital bed, so its going to be a busy day today, but I will check back after 6 central time. I really cant thank ya'll enough for all that you have given to me in the last couple of days. There are NO words!!!! Just saying "thank you" doesnt seem anywhere close to being enough!! Just know that it comes from the bottom of my heart.
Janet

Hi Janet,

I know someone personally who had to have her RSD leg amputated 2 years ago. It is not an option you should take lightly. She ended up with the RSD settling into the stump and is not able to wear the prosthetic at all. You can't simply cut RSD out by removing the affected limb.

I know how torturous this condition can be but this is not a good solution. I really hope you find some other treatment options.

MsL

I have had many days where I am just screaming (to myself) "JUST CUT IT OFF!!"

When I finally calm down, I realize that is not the answer. As mslday said, there could be worse consequences. Remember that the pain is really in the entire nervous system, including your brain. We "think" it is in our hand, or leg, or wherever, but the pain is really everywhere.

I know when I am feeling that amputation is the answer, I just need to rant, rave, cry, and get past it.

I really wish you well. I hope you can find a pain management doctor to at least get things a little more tolerable.

Mike