Have your doctors ever told you you do not have RSD? - Reflex Sympathetic Dystrophy Message Board

SFangel · 09-11-2003, 12:39 PM

Hi,

I would like to know if your doctors, nurses, etc. have ever told you that your RSD does not exist, that you are imagining your RSD, or that your RSD is all in your mind. Why did they say this and what did you do about it?

Most of my doctors used to believe I have RSD when they could see RSD symptoms on my left knee/leg. After I started Oxycontin, and later Duragesic, my RSD symptoms "disappeared" or became "invisible." I believe Oxycontin and Duragesic are masking my RSD symptoms.

One of my doctors accused me of saying I have RSD for "secondary gain", to get narcotic painkillers, to get attention, and to get more money from the person who injured me. That is outrageous! I would like him to walk in my shoes for a day so he will know I really have RSD.

When doctors tell me that my RSD does not exist, that I am imagining my RSD, or that my RSD is all in my mind, I tell them to leave my RSD alone and to take care of all the other medical problems I have.

dayton · 09-11-2003, 01:57 PM

My primary care doctor, after repeated office visits, said, "I don't know what you have but it's not rsd. that is a rare disorder and you don't have it. You need to loose weight, you just banged your foot, you can't get rsd from just jamming your foot under a chair. Here go to this neurologist and get him to run test." Phooney on that, I asked for the orthropedic surgeon and he diagnosed me with rsd just from symptoms, x-rays, and that three phase bone scan. He sent me directly to pain doc. Dr. Enty, who did block and said "oh yes, you do. It's early in the stage but the block confirms it."

I think the saddest part of this disorder is for those of us like Terri, Nakona, and others who have to bear the brunt of this alone. Society on a whole does nothing to assist those of us with "invisible" disorders and diseases. We are labelled chronic complainers, drug addicts, whiners, etc., by coworkers, spouses, family members, friends, etc. It's a sad state that often the medical professionls who should be knowledgeable about this, don't have a clue on how to treat it, let alone heal the patient.

Sorry, got on soapbox.

Nakona · 09-11-2003, 02:10 PM

I can't say that any doc has told me I don't have it, but I've been told it doesn't spread. There has been the undercurrent of disbalief, but it hasn't been blatently said.

I CAN say that the ortho that dx'ed me did NOT put it in my records. Can you believe that???

He didn't even put down the fosomax, amitryptiline, hydrocodone, naproxen, etc. He just put in there that my fractures hadn't healed, new cast, take calcium, see me in a month.

Can you believe that? The only reason I even know this is cuz my attorney requested my records and got them this morning. His assistant called me and told me that my lawyer is going to request a reason as to why I was told I was dx'ed with this and it wasn't put in my records. I'm thankful my lawyer is taking it seriously, but extremely ticked that my ortho evidently doesn't.

I'm glad I made a point of getting a referral to another hand doc. I'm dropping this ortho like a hot coal. Tempted to give him a piece of my mind along with it.....if I had a piece to spare!

Just want to drop kick something right now....

I hope we can all manage to find a good doctor to help with this disease. I know it isn't easy, but I keep praying for all of us.

Here's hoping for a "good" day...

Nakona

dayton · 09-11-2003, 02:26 PM

Nakona, now be a nice girl or you won't get asked out again!!!! LOL just kidding. (and you still haven't told me what you wore, where you went, all the juicy details!!!)

destinyevans · 09-11-2003, 05:15 PM

Hi

My doctor has never really questioned the fact, but what really ticks me off is my doctor looks at my foot every 3 months and says it's improving. LOL

He basis this brilliant statement on the fact I have no swelling like I did in the beginning. But I take it with a grain of salt. He's also the same doctor who told me RSD doesn't spread.

Thank god, I had 3 other doctors at the time.

Hugs Destiny