THESE WOMEN'S PAIN IS ALL TOO REAL.

Byline: DENNIS McCARTHY

May was officially proclaimed Reflex Sympathetic Dystrophy Syndrome Awareness Month in California last year by state lawmakers, and the Los Angeles City Council jumped on the bandwagon a few weeks ago, proclaiming it RSD Awareness Month in Los Angeles, as well.

What, you didn't know? Join the crowd.

This little-known chronic pain disease gets scant attention in the medical community or the general population, and its alphabet-soup nickname doesn't help.

``It's a ridiculous name that got coined at the outset, and we were stuck with it,'' said Dr. Edward Carden, a professor in pain management at the University of Southern California and director of the Southern California Academic Pain Management Center in Santa Monica.

``Now we're calling it Complex Regional Pain Syndrome, although RSD is still used, too,'' Carden said.

Whatever you want to call it, this is serious stuff. Serious for Cynthia Toussaint of Valley Village, and for Renee Rothman of Agoura Hills. Serious for Lauren Ressler of Burbank.

These women are just a few of the people who live in constant, debilitating pain. For years, they were told by most doctors that the pain was only imaginary, and that they should see a psychiatrist.

It turns out the pain isn't in their heads. It's in their bodies.

``Imagine if you had a toothache for six months; you'd be climbing the walls,'' Carden said. ``These women have been climbing the walls with pain for years.''

Toussaint, who started the nonprofit organization For Grace to raise awareness of RSD, spent 13 years being told by doctors the pain was all in her head.

``They told me I was nuts or a malingerer,'' said the former professional ballerina who suffered a leg injury that escalated into RSD. She is now a wheelchair-user with a morphine pump implant.

``After I started For Grace, named after the child I would never have now, I started to hear from other women with the same thing,'' she said.

``I started to cry. For 13 years, I thought I was alone.''

Lauren Ressler developed RSD after the main nerve in her left foot was burned in a scalding accident six years ago.

``The pain went from my left foot to my right foot to my hands, and now my entire body,'' she said.

Like Cynthia and Lauren, Renee Rothman was told the pain was all in her head when she complained that it was spreading through her upper body after she had surgery for carpal tunnel syndrome.

``It's been a living nightmare,'' she said. ``I wake up in the middle of the night and want to cut my hands and arms off, the pain is so bad.''

It was horror stories like these that prompted state Sen. Liz Figueroa, D-Fremont, to introduce a state resolution last year observing May as RSD month in the state.

``This is real, legitimate pain, not something in their head,'' said Figueroa. ``The sad thing is, most people have never heard of RSD, so, hopefully, we can bring some attention to it because early detection is so important in treating this disease.''

Los Angeles City Councilwoman Wendy Gruel, who introduced the motion to make May RSD Awareness Month in Los Angeles, agrees.

``We (City Council) had no idea RSD existed, nor does the public,'' she said. ``We wanted to let people know about women like Cynthia, who were misdiagnosed and told it was all in their heads when, in fact, it was a serious illness.''

The good news is that if detected early enough, RSD can be managed with sympathetic-nerve blocks, Carden says.

``In the early stages of the disease, the first three or four years, these blocks and therapy can take away all or a good percentage of the pain,'' he said.

``What we need now is more awareness of RSD because there is still a lot of ignorance. If you suspect you may have it, don't go to any old doctor, go to a pain management specialist for a diagnosis.''

For more detailed information on RSD, go to the For Grace Web site - www.forgrace.org - or call [phone].

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Photo:

Former ballerina Cynthia Toussaint, now in a wheelchair, suffers from Reflex Sympathetic Dystrophy Syndrome.

Charlotte Schmid-Maybach/Staff Photographer