Hi everyone,
I don't know about anyone else here, but I'm wondering if your doctor tries to force something on you because he/she wants to fatten their wallet. It doesn't seem to matter what the patient wants or what's in their (the patients) best interest---it only seems to matter what the doctor wants. Like they are the one thats living with the pain that we as crps patients or rsd or for that matter anyone that lives with chronic pain.
I just wish I knew why they "think" that they know what is best for us, or they just "know" that this procedure will work---they do everything but guarntee it--which they can't do that or Im sure that they would be being sued every other day.
I've had so many "quacks" over the past 7 years that I could probably write a book about them---the only thing in my favor is that I have most of the test results in a folder in my file cabinet, so it wouldn't be as though I was lying or mis-representing the facts in anyway.
If they believed so much in what they are doing then why do you have to sign a release form---not holding them responsible for anything that might go wrong??
I was just curious as to what ya'll are going thru some of the same stuff that I'm being forced to? I would love to know your opinion on this.
Thanks in advance for your comments.
Janet

What exactly is being forced upon you?

After several years of dealing with RSD, my wife still has to tell the doctor that she does not want to do certain things and take certain meds. It disturbs me as her husband, who does not have RSD, that this happens because I'm afraid the doctor may dismiss her as a patient. My wife refuses to take certain meds that she says do not work because she is in a latter stage of the disease and that they will not work, cause her to gain lots of weight, makes her head feel funny. She has every right to reject them, I believe. She's been told to go to physical therapy where they've actually made her feel worse by putting her on excercise equipment. She's tried many of these things with no success and has no desire to beat a dead horse over again. What I don't quite understand is when her doctor refers to a third party their desire for her to do these things. I'm not sure who she is referring to but I get the feeling it's the insurance company whom I hate with a passion.

Hi Janet,
I'm sorry you are having disappointment and frustrations with various Drs. you have had. A lot of us have had several Drs. before getting one we trust and is knowledgable about RSD.It was 9 years for me and found a jewel 5 years ago in the yellow pages. I was even misdiagnosed with RA. The R. arthritis tests were even negative. I never went back. I went to a sports injury orthopedic group and was diagnosed in 1 minute backed up with positive tests. I went out of state, but came back and found some good Drs. and after therapy went into remission. I've refused certain treatments after researching, it's our body and right.
Read and Research! before you have any procedure. RSDSA is a wonderful organization to learn a lot of information. I went to their annual meeting this spring, here in Arizona. They have a place to put in your zip code and you get back a name and phone number of group support leader closest to you. Going to local support meeting can be very upbuilding and informative of local Drs. Also rsdrx.com is a great place of information from a retired Dr. in Florida. Under Puzzles List is 140 questions patients have asked and Dr. Hooshmands response. It is VERY good.
Of course there is a lot of warm caring friends here and are always here for you. Lots of years of experience and happy to share coping skills. I'm so sorry your wife and YOU have been thru so much. Your support of her must make her heart warm with gratefulness.
I hope some of this has helped. Take care, loretta

Hi Marleen,
The PM doc that Im seeing now is hung up on me having the SCS & refuses to listen to reason. I had a tkr because it was "supposed to help my pain". I went into that surgery blindly listening to the doctor because he "knew what was best for me". I started doing research on the SCS & the more I read, the more I was not liking what I was reading. From what Ive been able to find & in talking not only with people here but from the nurses that I have coming to my house to help me & monitor my other health problems--they dont have anything good to say about the SCS. When I have gone to the PM doc & have all my information out---he brushes me off & never lets me show him what I have. I had to talk to their "shrink" awhile back when they were first talking about this & I showed him my information--since then---no one at that office has seen it, so I dont know if he told them that I had a bundle of stuff to show them or not. That might be the reason why the doc is so short with his time, now I dont even see him but I see his associates. Im still researching it & still am not liking what I am finding. The opana that he has me on works great but the perocet that he has me on---Ive been on since 07 & it just doesnt work anymore---he wont strengthen the dose & if I ask that means putting me on the schedule for the surgery for the SCS so I dont even ask anymore, but I am looking for another pain clinic that will take my insurance. I even have my nurse case manager with my insurance helping me try to find one. I really hope that another one can be found---one that is sympathetic to the pain that we who have this disease know that this pain is not fake & that surgery isnt always the answer to everything. Im on Neurotin--300 mgx 3 daily, opana---20 mg x 2 daily & perocet---7.5/500 x 2 a day & thats for the pain. Im on 12 other meds a day for my other health problems. Ive never been one for being on medication but I dont want surgery--atleast not the SCS surgery. Thanks for replying, I appreciate it. I want all the advice that I can possibly get.
Janet

Hi JimKing,
I know exactly how you feel & so does my hubby---we have been "jumping" through the hoops of the medical field now for 7 years. I was told years ago to see a "shrink" because the pain was all in my head. It didnt matter that I couldnt walk or anything like that---I just needed to see a shirnk & that would make me "all better". Sometimes I wonder how some of these doctors these day actually get a license to practice medicine. I find more information about my medical problems on the internet than they obviously know sometimes---it amazes me. Just know that there are obvious "quacks" everywhere---they just arent in one state.
If you go to rsdhope.org they have alot of information there---too much to read in one night----I have found alot of helpful information there. Just wanted to pass along that site---you might want to check it out. Im sorry that your wife has been through the ringer----I hate to hear that someone else has had to go through what we've had to go through---especially when there is no need for it.
Ive said more than once that the doctors need to experience what they are treating their patients for, then they might be more caring & atleast have an idea of what we go through. Im sure that it would make the whole doctor experience a whole new ball game if they had too.
They might not be so quick to judge us, if you know what I mean.
Janet

have youtried fentanyl patch? maybe start at 25mcg/hr and work your way up. if that is too high to start on, they have a 12.5patch.

mike

Hi Mike,
I started out on the patch. They gave it to me years ago for the rsd in my right foot & then again for my back. They also gave them to me when I was in the hospital for my tkr surgery & they worked. The new patch---the one without the gel in them is what the PM doc gave me but they didnt work at all. I was on the 75mcg. When it would rain---it was like not having anything on at all. Even on dry days they didnt last but maybe 1 1/2 days when they are supposed to last for 72 hours. That is why he switched me to opana 20 mg twice a day. That works great but he wont increase my perocet any higher than 7.5/500 & Ive been on them every since my accident on 8-10-07--so its like taking aspirin. He wont give me anything for the spasms that I have constantly or the swelling. Asking for either means according to his notes on my chart that I put be put immediately on the schedule for the SCS. No disscussion, no nothing. I really dont understand why either. Ive been battling rsd for 7 years now with no real solution for the pain & its traveled from my right foot to my back & now my left leg. Ive not been able to bend my knee since 07. Theyve not made any attempt to fix the fact that I only have 1 artery in that leg---your supposed to have 3. I saw 2 vascular surgeons about the artery---the first one told me to quit smoking & the second one told me to shoot the dog that did this to me. I guess thats their solutions to the problem---who knows??
Janet

Janet,
I Agree with you -00%. My last pain
management physician actually told me that he made no money treating a RSD patient unless he did "procedures". I've had many, many nerve blocks, pump trials, etc. Nothing works except medications. Because I refused to have a SCS by HIM, he refuses to see me again. No referral, No Suggestions. Just -Here are your perscriptions for 30 Days-- Goodbye!
I have no idea where to go or anything. Doctors , for the most part, DO NOT care what the patient says or feels. You are Lu cky that you have copies of your records. Good Luck! I hope you find a physician that actually listens.

Hi yiisd,
That sounds about right by a doctor. They truly dont care about what we go thru, they are only interested in the "MONEY" that they get from us, whether its from the insurance company or if we pay out of pocket. I truly believe that they should live one hour of what we go thru & then tell us that the crap that comes out of their mouth. That stupid pain scale that they go by doesnt even come close to what we go thru & when you tell them that---their response is "well you cant hurt that bad"---they dont live with this pain. When they leave their offices you can believe that they dont think one ioata about us we dont cross their minds at all. Heck once they leave the exam room you know that they dont think about us. I dont see how they can live with themselves & the way that they treat us. If it werent for us---they wouldnt have a practice & they would be out of a job, so you would think that they would be a little more "grateful" to us & show it alot more than they do. I know that there are good doctors out there, there just needs to be more of them in the pain management field. Its a rainy day here & my pain is off the top so Im going to go now, but wanted to reply to you.
Hope that you are having a day where the pain isnt off the top. Hope to hear from you soon. What part of texas do you live? Hubby is from there. Just curious. Hope to talk again soon.
Janet