Janet
Im so sorry to hear of the pain that your going thru. I would encourage you to really research amputation on an rsd limb,,Most everything that ive read isnt good, One site said that you must amputate above the flare line,,so in a case sernario,,if you had rsd a littler past the knee, and cut off the leg only to the knee,,the rsd still will spread,and most likely be worse due to the surgery.. But one woman had her leg amputated,but the posting of what happened,stopped,,,be carefull,,Im not talking you out of an amputation,,but just to fully exhaust all options and the repucussions,RSD is unpredicatable,,I'd fully exhaust every avenue with everyone and every dr That i could get an opion from,,thats a very serious step,,,But I do see why and understand why you are considering it,,,,,Best wishes ,,and Pray on the matter and ask God to give you an answer,,,He will answer you,,that im sure of,,,,,,,,,,,,,,,,,,,bobber,,,

I don't know where you live but if you tell us what state maybe someone sees a Dr. you might check out.

As far as amputation, I have a friend that lost his arm in a work accident about 6 years ago and he has the phantom pain. They guy is amazing but he lives on pain pills like we do. I would say no on that.

I was thinking you might look around in your area for an Anesteologist that has his own office that takes care of blocks for pain. They know their stuff. There is a lady around here that went to see the same one I saw and he got her up and walking. She walks with a limp but she gets around good now.

As far as the SCS, you can ask on here and I honestly believe you will see more disappointment in them then not. I have seen it around here in my area. I know of 3 people who had them in and they caused spread to all 3 and they are now off or out. Ask questions and research. Why would your Dr. push this with you not wanting it?

Do keep looking for a good Dr. None of us seem to have lucked up on the first one. My PCP does all of my pain management. I have yet to see a good PM Dr. in all that I have seen around here. They seem to get their kickbacks from pushing those pills and SCS's or surgeries in my area.

I'm glad you found the forum. You will learn a lot here and be able to use the knowledge to help you in finding that right Dr. that cares.

As far as ER DRs., none of them know anything about RSD at our hospital. They did however finally bring in an Anesteolgist that works with pain. The ER's seem to be another waste of time for most.

I did want to say why I think Drs. don't want to listen to us. We all have the same line. The pain is unbearable, I can't live with it. I think they hear it so much, it's like old news to them and they don't know what to do for us even if they are listening. I use to tell my Dr. to call in Dr. Kovorkian, or cut off my right arm. A lot of are suicidal from the pain. I just had a girl tell me that yesterday and her Dad is a Minister. I don't think they get the gist of just how much pain we are in unless we show them. Believe me, I showed my Dr. so many times he finally figured out if he didn't do something for me, I most likely would have killed myself.

Ada

Hi Bobber,
I just wanted to thank you for your response. I have a question for you---I had rsd in my right ankle 7 years ago, then it spread to my back & now I have c.r.p.s in my left leg. I was wondering if you knew what the difference was between r.s.d & c.r.p.s? I had an injury to my left knee back in 07 when my 200 lb husky hit my knee. I heard it "pop" instantly & its gone down hill from there. I had to wait exactly 429 days before any doc would really do anything for me. The ortho "talked" me in a tkr with the hopes of getting 5 % pain relief. He told me that if I didnt get any relief that he would "amputate"---but then he changed his mind when I saw him 5 months after the surgery. There is so much wrong with that knee that I think that surgery was a waste of his time & mine. He told me that the bones are so thin that he could squeeze them between his thumb & first finger. I had a dexa scan a couple of weeks ago & it shows that Im at high risk for fracture in both my left leg & my spine & the right leg isnt far behind. Ive done some research on amputation but I cant get any doc to listen to me. Its not as though I went to them & said---hmm I dont have anything to do next what ever day & say---take my leg. I know that it says that amputation is the worst thing that you can do for a crps patient---& I understand that---its just the pain is so bad every single day & I just sit in either my hospital bed or my wheelchair. I havent been able to sit in my big tub that I have in over 2 years. Like I said---I know that crps cant be cured---all I want is some kind of a life that doesnt include this much pain every day. I could handle it if it were only on rainy days--but its every day. Hubby & I used to do everything together---now I sit & watch him do all the things that we once enjoyed together. I would love to be able to work beside him again--but Ive come to realize that its not going to happen. I hate that I cry all the time, I just want a change---I even told the doctor that I need a change whether its for the good or the bad---something needs to be different. All they do is dismiss me like I dont matter. All I do all day is take pills for the crps & my other health problems. Im going to research it more, but I just wanted someone elses opinion on it. Sometimes I just feel like Im going crazy with all this pain. Most of the time I just want to scream--but I know that it wont take the pain away or change anything. Thanks again for your words, its just so nice to talk to someone else about this, someone who's gone thru the same things as I have. Its really nice to know that Im not alone. For a long time, I was alone. family & friends dont want to hear that you hurt. I guess they take the attitude--well you dont look like you hurt so why do you??? Thats one thing that I still after all this time just cant understand. My left leg is a completely different color than the right, its always swollen. Theres only one artery in that leg & theres no pulse. Anyway thanks for listening, sorry for rambling on so much.
Janet

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

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

My husband says they need a machine you could hook up to the doctor and they'd be able to feel exactly what we feel. He thinks they'd all drop dead from the pain. I agree. Why are they all so worried about addiction? I'd rather be a functioning addict then what I am with all this pain.

Yet they all roll their eyes thinking we're exaggerating or we're trying to get more meds or we're somehow playing them. I wake up in pain, I go to sleep in pain and I will probably die in pain.

And until the DEA and other idiots are taken out of the doctor/patient loop we'll continue to have problems convincing our doctors of the level of pain we have. Or until we have the machine........How many doctors would continue to tell you "You'll need to learn to live with it"

Here's a suggestion, that I think I've posted before, but I find it useful.. Unless I'm just feeling too badly to do it... And, my doctor understands that! I'm lucky, that I have a great doctor, who has known me since the early 90's.

Keep notes, (or your pain journal), a WP document, short and sweet.
You can edit it as you go,
but, you print it, and hand it to your doctor. It's saved on your computer, and Now, it's part of your doctors file!
Do that every visit if you can, and make note as to what has improved, what hasn't, what's new, etc.
This way, You'll be creating your trail of 'bread crumbs'.
(If you ever need to change doctors, you can reprint them, and give them to him/her).
Be sure you date them.

Your doc will have your own words (and records, with his) to refer to, whenever he needs to write a report, for instance.

This has helped me a few times, when I just felt so badly, seeing the doctor, I just wasn't up to talking much.

If you get a Dr. that's say, like mine a Neuro / Ph.D, they can tell by looking at you, how you respond, like that. (BTW, That's a good way to find a GOOD neuro! Check to see that's he's got some letters behind his name, in other words, he did some extra schooling).

Nobody should have to ask for meds, in todays world. But, if you're with a dr. that doesn't know you well, or, worse, doesn't know what he's doing, or about this disease, and is worried about his license....... it can and will be a problem.

Good Luck!

Pete

Dear Janet
I like the cattle prod idea,,,,,Their isle 14 in walmart for $27.50 Prod away,,,,,,God bless you janet ,,bobber