Hi everyone,
I was just wondering if anyone else was having trouble with getting their doctor's to listen to them? 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 ) 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

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 ---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.

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,,,

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