why won't doctor's listen to us??
 

Hi everyone,
I was just wondering if anyone else was having trouble with getting their doctor's to listen to them? :confused: It seems that no matter what I tell the pain doctor, the ortho or any doctor at the emergency room---they all have the attitude that they know more than I do. Half of the doctors at the emergency room---haven't even heard of c.r.p.s---let alone be able to do anything for me. It took me months to get the pain doctor to give me something stronger for the pain---he did give me a long acting pill that I take twice a day---but he refuses to budge on the perocet even though I've been on the same strength for over 2 years.
When I go to see him---I can't be in pain, even though its over 50 some miles & thats one way. If I am in pain then he has it in my notes that I'm to be put on the schedule for surgery for the spinal cord stimulator---I don't get a say in it at all. The research that I've done says that a stimulator doesn't work, there are even doctors that won't advise their patients to have it. He told me that the success rate was alot higher than I've read about, not that it surprises me any at all--not after all that I've gone through with them over the years.
I know that this might sound stupid but why is it that all that matters to the doctors is MONEY?? I thought that they took an oath to "help" their patients---or is that just when it suits them?? The ones that have heard of this disease know that there is no "cure" for this & that we are the ones that have to deal with this pain on a daily basis not them so what does it hurt them to give us something that will control the pain??
I just want the pain that I'm in 24/7 to be better controlled than it is---why do they make it sound like I'm asking them to give me a million dollars?
Was just curious if anyone else was going through the same stuff that I am & how many of you there are.
Hope that I'm not the only one having these kind of problems with the doctor. Thanks & hope to hear from anyone else having these kind of problems & what you did to actually get help. Thanks.
Janet

janet
Welcome to the club,,,I think its safe to speak for everyone here ,that we all have been thru the mill when it comes to trying to get the dr's to come down into the gray area that we live in and have a 2 way conversation,,and I personally think ,that it insults them that we try to diagnose ourselves,,but to be honest Our bodies tells me when somethings wrong whether they want to believe or not,,,,,Start looking for another dr if your not satisfied,,And your right,,Alot of dr's dont know or havent heard about rsd,exspecially the emergency room,,Good luck to you,,,theres alot of informative people here,,and most of all ask God to help you,,And empathy has gone out the widow with alot of dr's,,,somethimes its like they just run as many patients thru like a drive thru or like their hearding cattle,,I am so disapointed with the world[not just the medicaal world],,thats why I depend and put my hope in God,,Good luck to you,and speak your peace when your at the dr's office,,Lord knows that ive infuriated many a dr,,,,,,,,Im not proud of It,,,but when I do a job ,,I do my best to do it right,,were not perfect,but we should do what is right,,, ,,,,,bobber

First and foremost--
Remember YOU ARE IN CONTROL OF YOUR CARE.
Never let a doctor try to tell you otherwise.
You don't have to agree to procedures you don't want.
Its definitely OK to say and emphasize that you are in pain, and yet do not think a surergy, etc is in your best interest and ask for other options.
If your current doctor does not like it or treats you with disrespect, keep searching for another one. I'm on my 3 rd pain management dr.

As for my personal experiences....
Most of my physicians have heard of CRPS/RSD. The problem is, almost all of them have different opinions of "how" to best treat it. (My neuro-- who doesn't treat my CRPS/RSD is currently at odds with my PM who does :cool: ) Figure out-- and definitely ask them, their philosphy on RSD/CRPS, how they prefer to treat it, etc and decide if it meshes with your views. Not only in medical sense, but in a personality sense too-- you have to find someone you feel you can communication with honestly and without fear. Talk to their staff as well. Some people prefer going to a large teaching hospital, others don't. Some people prefer to be treated by a neurologist and others by a pain management specialist. I've tried all types, and have found that the teaching hospital enviroment is not for me-- I feel like a number and rushed. It doesn't matter, to me, if the doctor is a Neuro or PM. I'm currently seeing a neurologist for my epilepsy and a pain managment dr-- who's at a small clinic, for my RSD/CRPS (BUT in the past I've had a wonderful neurologist-- who diagnosed the RSD/CRPS and treated all my neuro issues :) ).

Also remember that each person's experience with RSD/CRPS is different. The RSD/CRPS in my pelvis/abdomen was "triggered" by surgery, however I've had RSD/CRPS in my legs for years, that went undiagnosed until recently. Hence, it has started to effect my internal organs and body systems. So, in addition to the neurologic and pain aspect of it, I have an autoimmune component to it. When one thing gets triggered, it sets of a chain reaction (example: when I have lack of sleep due to pain, the lack of sleep causes increased seizures, etc or when I get sick, it cause a huge in my pelvic RSD, triggering bladder issues, etc) and it gets to be a vicious cycle that somehow has to be broken. Getting doctors to understand that has been my one of biggest challenges (vs playing the "well, its the other specialists issue" ).

Hang in there !

L2L

Hi Janet and Welcome, You will find a lot of comfort and good information here on the forum. Even though we all are at different stages and react to different meds, we are a comfort for each other. I personally feel there is such a lack of knowledge among the medical profession, and I also feel fear is a factor because of so much litigation and so many different procedures can and do make us worse. So many Drs. really don't want to have us as patients.
I got RSD following surgery, but wasn't diagnosed for 4 years. It's been 14 years now and full body. 5 years ago I found a very compassionate Dr. -a psychiatrist, neurologist, and pharmacologist. He doesn't take insurance and I see him once a month $250 hr. He is compassionate, helped me thru some rough times. I respect him and he respects me. His knowledge and openness to treatment has kept me mobile and out of a wheelchair. I am crippled in my left hand (before this Dr.)
One way to find good RSD Dr. in your area is to look up RSDSA and put in your zip code. It will give you a support group phone number and name.Our support group in Phoenix is at Barrows Neurological Institute. Good place for support and Drs. names. Another website is rsdrx.com- a retired RSD Dr. still has his web site up-under puzzles are 140 questions and his answers. A lot of good information.
I believe most of us have weakened immune systems and my Dr. is encouraging me to get flu shot and h1n1 shot. I have a weakness in my chest.I never have taken the flu shot, but am going to this year.
Please know we care and want to be of support to you. Today I had a meltdown. Doesn't happen every week thank goodness, but today was pretty bad. High pain, etc. Your friend, loretta

why wont doctors listen to us??
 

Hi everyone,
I really want to thank you all for your posts, it really means alot to me that you would answer me. From what I've been reading this morning on the different posts---Im not like alot of you in the aspesct that Im unable to walk at all. Ive not walked in 2 years because the doctor that I first saw didnt want to listen to me & now Im either confined to my hospital bed or a wheelchair. I truly believe that if the first ortho that my doctor refered me to wouldve done a better "job" & listened to me that I would be able to walk now, but since I cant change the past, I have to live with where I am now. On rainy days thou that is really hard because the pain is as they say "out of the park". :( Ive never asked them for a "miracle cure"---all Ive ever asked them for was for some pain relief---you would think that I commited a major sin by asking for this, by the way I was looked at & swept out of their office. I still dont understand why they wont close their mouths & open their ears. Although both on are located in the same general area they have nothing to do with each other :rolleyes:---or so you wouldnt think so. lol lol
I dont live in a major city & doctors around here are really hard to find---especially "good" ones. I have 2 good doctors but neither one of them can help me in my current condition. They understand the pain that Im living with every day, but their hands are "tied" as to their helping me.
They dont "rush" me out of the office because they "overbook" their schedules---they spend time with me as a " real person"---which after seeing the ----what I like to call the "idiots" for so long, its really great to have someone that will atleast listen to me. Its also extremely hard around here to find a doctor that will take my insurance, so that closes alot of doors for me. I dont know if I said anything about my powered chair or not, but I got it after almost 2 months of fighting---but they have to wait on the "trough" for my leg before they can deliver it to me.
I cant exercise at all, I cant even stand the sheet on my leg, so it makes it extremely hard for most people to understand what Im going through---they think that they can "catch" it if they get to close, so they just stay away.
Ive had family tell me that I "enjoy my life too much", that I should "read a book", do a crossword puzzle, along with other things & that will make my pain all better. The thing that gets me is one of my family members was a nurse & she still tells me that reading a book, or doing crossword puzzles will take my pain away. Thats the thing that I dont understand. What happened to that old phrase--if you dont know what to say, then dont say anything at all??
Well I know that I have rambled on enough, because Ive had to shift positions in my bed too many times, so I will shut up for now---but hope to hear your opinions on this.
Thanks again for the comforting words because I dont get them from any of my family & they sure do mean alot.
Hope that you are having "dry" weather, because we are not. OUCH!!! Hate the rain. ;)
Janet

Excellent answer! Yes, I too, have been through a ton of doctors and only one has seen my leg in a full blown flare. My family MD has done more for me than any other doctor I have seen. He has MS, so he understands all that I have been through. It is a crazy ride with RSD/CRPS, but you have to keep looking and never give up finding a doctor who will listen. That's why I love it here on this board because everyone listens and understands. You are definately among friends here. Good luck and never hesitate to ask questions here or with your doctors.:D

why dont doctors listen to us?
 

Hi again,
I was just wondering if any of you have ever done any research about amputation? I have begged the doctors to do that in hopes that I would be able to get a prostestic so that I would atleast be able to be mobile. From what Ive read about amputation there is phantom pain but the pain that I have on rainy days cant even come close to the phantom pain that they talk about. I would really appreciate your view on this & if you've read anything about this. Hubby & I talk about it on a regular basis but we would appreciate someone else's view.
I know that it sounds desperate & I have given it alot of thought---this pain is getting the best of me & Im really trying to fight it. I just want to be able to get into the tub or shower & not have to worry about the water causing me pain. When water hits my leg, it feels like a volcano. It burns anyway but the water makes it worse. I can't tell you how nice it is to be able to talk to someone else about this, because my family has no idea of what I go through on a daily basis. Hubby & I both hurt---he has RA & he has to help me which I know causes him pain but he does it everyday & doesnt say a word about the added pain. I really dont know what I would do without his love & support that he gives at all hours of the day. Even in the wee hours of the morning when Im crying in pain.
I really appreciate the responses that you all have given me & it really means alot that someone else can share what we go thru & not be judged. Thanks again & hope to hear from you. It helps me tremendously to know that Im not alone. Janet ;)

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,,,

Hi Janet,
 

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

why dont doctors listen to us???
 

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

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 :hug:

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

why wont doctors listen to us??
 

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.:rolleyes:
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.:grouphug:
Janet

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

why wont doctors listen to us??
 

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!!!! :hug: 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

Amputation
 

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
:hug:

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!)
:hug::grouphug::hug:

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 :hug:

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

Successful treatment for RSD from a doc who listens
 

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

Dr. Rhodes
 

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!!! ;):):D 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.
:grouphug: :hug:
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 there rsdfree, I sent you a message. To access it go to the top right of any page and you will see your user name. Click on that to open your own home page.

Hi Janet,
 

The forum just seems slow this week. Some people might be having good weather and just enjoying it or busy.

I have been busy this week with taking the boys to get hair cuts, and helping them get ready for Homecoming dance tonight. I swear sometimes I think they don't have parents. They call me for everything.

Today I have to help a friend and then I have to go over and take pictures of the kids tonight and then go pick them up from the dance.

The weather has been cold here of the morning. I have my heat on right now.
It's suppose to get to 70 today though. Not typical for here.

If you made someone mad here, you would know it. LOL You are fine. I just hope you start getting the help you need to start being more painfree.

Keep looking for that right Dr.

Ada

Well, I would like to know what these "tests" are. I have never heard of them before. Pain management doctors don't test for pain.

Seems Dr. Rhodes needs to get more involved. Get his testing accepted by mainstream doctors. If it is so wonderful, he could reach millions of people and that I would think would be an admirable goal!

Hi Janet,
 

I was born in Ky. but have spent the last 36 years in Colorado. What I meant about the weather not being normal is that we usually don't see this fall like weather until Halloween. The kids around here maybe have one good Halloween without rain, sleet or snow once every 10 years but up until then we usually have great weather. It was 39 this morning but got warmer. I had my heat on 2 times in August. Who does that accept maybe in Alaska.

As far as the cold feet and legs, I deal with the same. The kids got me an electric blanket for my birthday and I am already using it at night. It does help but I will say that my legs still take forever to warm up. I also have Plantar fascious in my feet. They burn on the bottom if I am on them too long but they feel cold. Like you said, it's just too wierd. This new med my Dr. put me on, so far isn't doing anything for anything. It might take time though.

I am tired. I just got home, I have to go down in a bit and take pictures of my boys ready for the Homecomeing dance. I will put their pictures on my album tomorrow. I have to go get them and take them home after the Homecoming dance so I am probably looking at midnight by the time my day ends.

I think you will find that right Dr. Most of us do on here but I will say Janet, it is sure not an overnight thing with most of us. I have my PCP but I saw over 50 Drs. before he finally just said he'd take care of everything.

One thing I learned also is how to present yourself to Drs. My PCP councelled me in how to talk to them and how to act when I saw one. I learned there were certain ways a person don't want to come off as when they see the Drs. You have to make them think that you aren't crazy. LOL When I first started out with the RSD, I thought I was going crazy. I think too you have to make them think that you are agreeing with them but then say, you know I agree with you but could we try this too. Give them ideals and make them think they are right. Don't show anger either. I did that at first. After awhile you get frustrated with seeing so many and then it turns to anger. It sure did with me anyway. Don't mention the forum either. If you present any info just tell them you read it on the computer on a Medical site. They aren't too crazy about forums due to none of us being Drs. so they think we don't know anything.

I'm not very smart on RSD either. When someone asks me what it is, I can't even find a short explanation for it. I just know what my Dr. did for me to get me to where I am today. We learn as we go.

Ada

Hi Ada,
We live in TN & even thou it doesnt get as cold here as where I grew up (PA) it still gets cold. We havent had the heat on---we normally build a fire in the fireplace, but hubby hasnt been able to do that yet, because of having to take care of me 24/7--he hasnt had the chance to cut any firewood yet. Besides he hurts from his RA.
I guess that in the last 7 years Ive seen probably close to 50 doctors---they just dont know what it is here so they pawn you off on someone else & on & on & on.
Even though most of the ones that I have seen have been either in Knoxville or Chatnooga---which are alot bigger cities than where I am---they still dont know. Most of them are like its "all in my head, you need to see a shrink"for awhile there I thought that I was going crazy. I mean if you hear it enough, you start to think that way.
Ive had alot of "dark, dark days", its a struggle every day, especially when I hurt really really badly & nothing works at even taking a "little" bit of the pain away. Now that I got my jazzy & Im no longer confined to the front porch, its getting a little bit better. Today I went down to the mailbox all by myself--well my dog (Grumpy) followed me, I cant tell you how "wondeful" that was. Ive not gone anywhere by myself in 2 years & 53 days. I enjoy when hubby goes with me too, but just being able to do it "myself" was wonderful, because I cant do anything else by myself. ;) Im in central time, so how far ahead of me time wise are you?? Do you do daylight savings time where you are? Hopefully when you get home from getting your boys from homecoming you will be able to sit down & relax.
Hubby built me a rack to keep the sheets off my leg cause nothing can "touch" my leg so that leg doesnt really get too warm, even though it constantly has that "fire" feeling, but being in the sun too long makes it feel like a volcano has hit it.
Its supposed to be another cold night here---I would love for it to be around 70 all year long. lol lol With no rain & no humidity---that would be great. lol lol
Well thats all I know for now. Thanks again for your wise words. :hug:
Janet

...the joy of wheels
 

Hi tiredofPain
The joy of wheels have brought new possibilities to me as well!! I understand your elation and independence that your Jazzy chair has brought you!! Something as minor as going to the mailbox alone is cause for celebration.
I've had my mobility scooter (Go-go Elite made by Pride) for over a month now and an automatic lift that lifts it in and out of the back of my van..(W.C. covered it..after many letters from me and the support of my doctors... it has given me a renewed independence and a way for me to make plans as long as my pain level is tolerable.
Things I've done!!

1. Taken a long "walk" on the bike path along the ocean with my son and daughter who live in Santa Cruz (Cal) :)
2. A trip to the mall just to ride back and forth on the smooth flooring and look at the store windows and get a coffee..(alone!!!):p
3. Gone for a walk along the path at the state park! (oohhh,I had been waiting for this for a long time! :rolleyes:
4. Rode the mobility scooter from my car to my Saturday class today and therefore had a tolerable pain level.last week I walk from my car to the class..and paid dearly for that with horrible pain..:o

I share your joy about your new wheels!! I'm so happy for you! Happy trails!!
Hope4thebest :hug:

Hi Hope4thebest,
You are right about having a little independence, I didnt think that I was ever going to get it. I wasnt able to leave my front porch unless I was going to a doctor. The maual chair doesnt get around to well with the gravel driveway or the hilly yard too well but the jazzy sure does. I absolutely LOVE it!!! I dont know if I said anything or not but my insurance wont pay for the lift, so Im unable to take it anywhere around town like the doctors, grocery shopping but I sure would love to be able to do that. Maybe then people wouldnt be so eager to run into me. They dont even say that they're sorry after they do it & wal-mart employee's seem to be the worse. They know that they've run into me because I say "excuse me" & they just go on their merry way. They dont realize the pain they cause me when they do that. :mad: I just hope for the day when I can do some of what you have been able to do. Something to look forward too!!! I just wish that I could attach a "cattle prod" to my chair :D---maybe then they wouldnt bump into me anymore. lol lol :Ponder::ROTFLMAO: Just something that would let them know that it hurts when they dont look where they are going. Its even bad in the doctors office---where you would think that people would be more careful. Its like my leg sticking out is a neon sign saying "hit me--it doesnt hurt". Yeah right!! Its definitely a whole new world for me right now & it really feels great.
Thanks for the encouraging words & it definitely gives me something to look forward too. :hug::);)
Janet