Hi KateLynne and others who posted here,

First, while I don't know anything about his anatomy, the urethra is generally larger than a pin, so "pindick" is probably not the right word to describe him.

He is, however, a male, and we males usually have to work at overcoming the belief that our penis somehow makes us superior to women. As a physician, I'm guessing he probably assumes that the fact that more women than men suffer from this disease means it is probably psychosomatic (it is no coincidence that "hysterectomy" and "hysteria" sound much the same; it was not all that long ago that doctors believed that removing the ovaries, the source of many hormones, made women saner); beliefs are in the brain, which is in the head. I suggest that dickhead is a more appropriate classification.

Now, as to your RSD: is your skin in affected areas blue to purplish in color? Does 60 degrees feel like frostbite? Cyanosis is almost as common as burning pain and allodynia in this disease. How does he explain this in the context of a pain syndrome?

Like most physicians, he certainly knows that glove-effect pain, whether of just the hand or foot or an entire limb, is most likely either malingering or evidence of a psychosomatic disorder. Guessing again, he probably thinks we are probably somehow able to affect the sympathetic nervous system; causing vasoconstriction that would explain the cyanosis, but a Doppler blood flow study would exclude SNS vasoconstriction.

You could try to challenge his distorted views, even try to educate him about the facts of RSD, but why bother? His mind is already made up, and you need to seek the treatment he refuses to provide. I agree with nearly everyone else who had posted here, dump the jerk and find a doc who believes you.

About cyanosis: what you actually see are thousands of microvascular systems very close to the skin. Blood is not circulating through them and the blood that is trapped has been depleted of oxygen. That is the only explanation for cyanosis. There are several reasons why blood isn't circulating; the most common being that you are dead. Sympathetic vasoconstriction and peripheral artery disease (atherosclerosis as a result of plaque buildup) but Doppler studies will exclude them). Late stage diabetes and Raynaud's disease are other explanations, but tests can exclude them too.

During my five year fight with workers comp I was seen by twelve doctors, nine of them diagnosed or confirmed RSD simply by looking at my purple foot. The tenth actually tested the difference in skin temp between my right and left foot before confirming it.

Of the other two, one had obviously never seen RSD; he suspected atherosclerosis and ordered the Doppler study. Number 12 was one of three work comp ordered IME's (individual malpractice experiences), and he claimed I was not only faking the RSD, but all of my other nerve damage symptoms, despite MRIs, a CT scan and EMG that objectively confirmed them. The work comp law judge, SSDI and private disability insurance ignored his report.

It is a damn shame that cyanosis is not listed among the diagnostic criteria for RSD, and every doctor who has written anything that includes diagnositic criteria is guilty of lying by omission. Cyanosis was commonly mentioned in the literature until the late 1940s, but fell into disuse after blood flow studies proved that SNS vasoconstriction was not present in RSD. This is the only neurological explanation for cyanosis, and once it was gone doctors just stopped talking about this important sign.

We often suffer from misdiagnoses such as malingering and psychosomatic disorders because cyanosis is not mentioned. We suffer because RSD experts won't talk about it, and they don't talk about it because they can't come up with a neurological explanation.

I don't believe the ten doctors who diagnosed or confirmed RSD simply by observing cyanosis are exceptions; that every physician familiar with this disease reaches the same conclusion. The reason they order other tests is that they know that mentioning cyanosis would complicate work comp and other insurance claims: it isn't listed in the diagnostic criteria so they must find other ways to confirm RSD.

As I said earlier, it is a damn shame that cyanosis isn't listed; if it was, your doctor might actually believe you and provide the limited treatment that could help you cope with this disease.

A NOTE TO MOMMYJEN: I suspect that your success in selling antiques is not enough to support your family. My wife and I (she is also disabled) survive on SSDI and private disability insurance, both of which would end if I tried to earn money in any way.

Before I became a social worker I took paralegal studies at a local university; I didn't graduate because I knew I could not carry all the law books necessary for almost any case from the shelves to a nearby table. This was before computers. So I didn't take the final in one of my classes and didn't graduate.

I think I could eventually earn a better living as a paralegal, even though I too am bed confined. I was very good at it, earning "As" in every class; but that would take time, meanwhile I would lose the income I rely upon the moment I earned my first paycheck.

I don't know whether you worked long enough to qualify for SSDI, but with a working husband I know you wouldn't meet the means test for SSI, so a part-time income wouldn't be a problem.

Using your experience as an example for those of us who survive on disability payments is, as my son loves to repeat, comparing apples with oranges. It doesn't work.

If I'm guilty of "piling on" in my reply to you, I can only say that every post of yours that I have read makes it appear that you feel morally superior to us or are being downright dishonest: I don't think anyone who reports they are bed confined can honestly claim to have learned how to cope with this disease any better than the rest of us...Vic