Help My Hurt

Company’s calling: For Grace’s founder, Cynthia Toussaint speaks out

by Marijke Durning, RN on May 26th, 2008

This week, our lady has a visitor again. We welcome Cynthia Toussaint, from Los Angeles, CA, founder and spokesperson with For Grace, a nonprofit organization dedicated to ensuring the ethical and equal treatment of all women in pain.

She shares with us her journey with Reflex Sympathetic Dystrophy (RSD), as she says, also known as the Suicide Disease.  RSD is more commonly referred to now as complex regional pain syndrome, or CRPS.

Can you tell me about when you first started experiencing the pain and what kind of pain it was?

I was stretching at the ballet barre in October of 1982 –as I did everyday.  I felt and heard a pop in my right (supporting leg) hamstring that felt like a guitar string that had been plucked and broken.  

Did you seek help right away? What type of help did you get?

Yes.  Because the radiating pain down to my foot and up to my buttocks was so extreme by that evening, making it virtually impossible for me to sit or lie on the right side of my body, I went to see my ballet trainer first thing the next morning.  

He gave me whirlpool and ice therapy, along with ankle weights to strengthen the hamstring — and advised me not to dance for possibly up to eight weeks depending on the pain.      

What did the doctors tell you when you did seek help?

At first they told me that it was simply a torn hamstring that would resolve quickly.  When the pain continued to get worse, I was told to quit dancing.  I was dancing professionally in two shows a night at the Flamingo Hilton in Las Vegas while crawling around our apartment floor during the day due to the ever increasing pain.

When the pain spread into my left leg– and later throughout my entire body– I was told for over a decade that my pain was imaginary… that I needed to see a psychiatrist.  Even after the psychiatrist’s report came back normal, the doctors brushed me off, saying things like “you have stage fright”, “tendonitis from Mars”, “you’re only a woman anyway.  It doesn’t really matter.  Why don’t you just shoot yourself in the head.”  Disparaging things in that vein. 

What have you tried to help you with your pain?

A million things over the last 25 years — but here are the things that helped.  Hydrotherapy.  Pilates.  An understanding, compassionate doctor who believes me and is willing to partner with me.  Pelvic therapy.  Feldenkrais.  Anti-seizure medications.  My own custom ballet floor physical therapy each morning.  And heat helps.  Most importantly, my partner of 28-years, John, who loves and supports me each day.  Also, running For Grace (if I’m good at pacing myself) is good for my body and soul.  Writing my memoir is currently a great catharsis and healer for me.

Can you tell me a bit about what worked and what didn’t?

All above helped me… icing hurt me because it spread my RSD.  Also, working through the pain (physical therapy) ALWAYS set me back further.  Also, I’m a workaholic– and in 2004, I worked straight through a serious flu, resulting with the diagnosis of fibromyalgia, that starves me of sleep!  

How does having this pain make affect you in terms of how you live your life?

I’m always in pain and many days extremely fatigued.  I use a wheelchair for any walking distance over a 100 ft. or so.  Also, I need a caregiver for cooking, cleaning, shopping, laundry, etc. I’m isolated because I can’t get out without a caregiver.  I was bedridden for ten years due to pain before I got any treatment.  And I couldn’t speak for five of those years while the RSD ravaged my vocal cords and the rest of my body.  John and I used sign-language and I wrote on a board during those years.

I lost all my life dreams and ambitions — so I’ve re-invented myself using the skills I have left to give my life great purpose and meaning.

If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?

I now know that my HMO doctors were never going to stop abusing me, let alone treat me.  I had government insurance (Medicaid) that I signed over to that HMO.  If I were to do it again, I would have walked — or wheeled — away from that abusive system and gone to Medicaid doctors.

I needed pain specialists who had no incentive to not treat me from the moment I became ill.  RSD, if caught and treated early, is often put into remission.  Sadly, that was not an option for me…      

What would you say to someone in a similar situation who is just starting to try to find treatment and relief?

My standard advice is to get yourself to a multi-disciplinary pain management center affiliated with a university/medical school as quickly as possible.  It’s your life and it’s worth saving.  Also, walk away from any and all healthcare professionals who dismiss or discount your pain…

All of us with pain deserve to be treated in a timely and respectful manner. 

Also, educate yourself about your pain and/or diagnosis on the Internet.  I surely do wish we had had this extraordinary technology back when I got sick in 1982.   

Thank you so much Cynthia for taking the time to tell us your story. It’s one of those illnesses that are not understood, let alone known about.

For those who are interested, there is a conference going on at the end of this week, called the Women In Pain Conference: Gender Matters.

I would have told people about it before last week but, unfortunately, I had not yet been in touch with Cynthia. However, I’ll let you know what comes out of the conference, with Cynthia’s help. As well, this is the first conference and I’ll be sure to know about the next one with more advance notice for you all.

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POSTED IN: Chronic Pain, Company's Calling, Neuro, Pain Management