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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


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.
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.
Hi, everybody

Thanks for sharing your experiences.

Dayton, I guess your primary care doctor did not want to admit you have RSD because he is not very knowledgeable about RSD and because he cannot see any visible RSD symptoms even if they are there. Some of my doctors refused to diagnose me with RSD for the same reasons, even though the history of my symptoms indicates RSD.

I tried to get a diagnostic nerve block from my neurologist but he refused, saying that nerve blocks do not help diagnose RSD. I am still looking for a doctor who will accept doing a diagnostic nerve block on me.

Yes, I also have to bear the brunt of RSD alone because some of my doctors, family members, and friends refuse to believe I have RSD for various reasons. You are right; those of us with “invisible” disorders like RSD get labeled “chronic complainers”, “drug addicts”, “whiners”, “malingerers”, “secondary gainers”, etc. Grrr!

Nakona, it is so shocking that doctors are so ignorant that they think RSD does not spread. They certainly need to learn more about RSD from other people, whether these are doctors, RSD patients, family members, friends, etc.

Your doctor is doing a very poor job by not documenting his RSD finding and your medication regimen in your medical records. Most of the doctors who said I have RSD wrote it down in my records. However, they did not put down in my records all the medications I am taking.

I think they lost your records because they have something to hide, but I do not know what it is.

You said: “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 wonder why your RSD diagnosis was not inluded in your records also.

Destiny, before your doctor says you are improving just by looking at your foot, he should ask YOU how YOU are feeling. YOU know best if YOU are improving.

Riceneuroni, I agree that it does not matter what doctors call our RSD. Pain is pain! Of course, if you were trying to get narcotics, it would probably be another story. I noticed that many doctors want the diagnosis of a painful chronic pain condition in order to start prescribing narcotics. Grrr!





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