One Woman’s Story of a 30 Year Battle with Chronic Pain

One Woman’s Story of a 30 Year Battle with Chronic Pain

Cynthia Toussaint

Cynthia Toussaint

If the Institute of Medicine is right, there are 100 million Americans who suffer from chronic pain. Many of them, the IOM says, are undertreated.

Cynthia Toussaint of Los Angeles is one of those Americans.

Ms. Toussaint chronicles her extraordinary 30-year battle with and against chronic pain in a memoir: Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.

Ms. Toussaint and her life partner of 33 years, John Garrett sat down for an interview with the National Pain Report to talk about their experience, the book and the lessons they are trying to share with other chronic pain patients, especially women.

Cynthia was an aspiring ballet dancer who was finding professional success in Southern California when she felt a burning sensation behind her knee. As ambitious athletes are sometimes prone to do, she continued to dance and perform while trying to endure the pain.

“It felt like my leg was on fire,” she said, “but every time I spoke with a doctor about the problem, I was essentially told ‘it was all in my head’.”

It wasn’t.

Thirteen years later, it was finally diagnosed as Reflex Sympathetic Dystrophy — today known as Complex Regional Pain Syndrome (CRPS) —  a chronic pain condition that can affect any area of the body, but often an arm or a leg.

Battle for Grace Front CoverIn her book, Cynthia is highly critical of the doctors that treated her. Those 13 years were “pure hell” she says.

“I couldn’t speak for five years, and was bedridden for ten. I contemplated suicide. I tried to hurt myself and, at times, I just hated everyone and everything.”

John met Cynthia in college at UC Irvine, he an aspiring actor and she the dancer, and never left her side. John shares his feelings at the end of each chapter in the book.

“To say that our relationship was tested is an understatement,” said Garrett. “The pain that she suffered didn’t play by the rules, but here we are today.”

Toussaint has turned her considerable energy into a role as an advocate for chronic pain patients.

Her experience has made her skeptical of the medical profession and urges patients to “be in charge of our own pain.”

She has also become politically active and testifies often in Sacramento on state health legislation.

“I also talk a lot about gender bias,” she said. “More women suffer from chronic pain that goes undiagnosed and undertreated. I’m hearing from many women who share their stories and thank me for going public with mine.”

Life for Cynthia and John is better these days.

Cynthia is physically active again after almost two decades without exercise. She swims 60 laps every morning and is able to do pilates .

Her voice came back, she is singing again and the non-profit organization she and John started, For Grace, is promoting these issues including an annual Women in Pain Conference held each September.

She does this because she remembers and wants other chronic pain patients to know that she understands.

“Because I was candid about my mal-adaptive behaviors in Battle for Grace, women have confided to me their unfortunate choices – such as  self medicating,  domestic violence and literally committing crimes as a cry for help, all in the pursuit of just trying to feel normal again,” she said.  “It is a conversation  about the “unspeakables” that we all need to have as chronic pain patients, loved ones and caregivers. That’s why I wrote this book.”

(Editor’s note: We have asked John Garrett to write a future guest blog for the National Pain Report to talk about the challenges that loved ones and caregivers face with chronic pain patients. If you know of other patients and loved ones who would like to share their story, please contact us at the National Pain Report.)

Authored by: Ed Coghlan

There are 14 comments for this article
  1. Philippa at 9:52 pm

    In 2006 I cut my thumb while working in an equestrian stables (jumpers) a week later I was rushed to the hospital and was diagnosed with Flesh Eating disease. I thought that that was bad enough, but no, I had this excruciating pain running through my arm, no matter what I was given it never let up. Then came the diagnosis of CRPS! I could not understand why the unrelenting pain, now I do. I originally had an extremely high pain tolerance, now I just live with unrelenting high pain. Somehow I make it through a day but sometimes I don’t do so well. I don’t sweat the small stuff anymore. Through all of this, I discovered that the oh so wonderful Province of Alberta I am considered a farm worker and there is legislation in place so that farm workers are not to be covered by the Provincial Workers Cmpensation Insurance, what a shock. My life has come to a halt with this disease but my main focus is fighting our provincial government to get this piece of legislation abolished. In 10 years in Alberta over 600 farm workers have been killed with no compensation to their families by the people that they work for. I thought that slavery had been abolished, but not in Alberta. The fight is hard when your body is fighting back with pain, but this disease has made be more determined than ever to make a change.
    ,

  2. Bethann Powers at 11:48 am

    This is a wonderful life experience that so many can relate to. I also love to see the flip side from the care givers side. I am a CRP survivor and have a wonderful husband of thirty years and friends and family that are a huge part of my life support. We are not the only ones who suffer , our loved one do too. In one way or another. In Minnesota we had a group for support but it disappeared and I think we need to get more supporter out there and thank you for you book and this sight because I believe in fate and maybe just maybe we and get something started. Everywhere.

  3. Pamela at 10:51 am

    Thank you for your article about CRPD/RSD. After a fall in November 2012 that broke my foot, I was diagnosed in late January when my foot & leg continued to swell & be painful. Currently my condition is worsening & I can hardly walk, even with a walker I just can’t move. My doctors don’t want to give me a wheelchair or help me find handicpped housing, and I feel lost. I am also a single mother of an 11 year old son, and we need to find help soon! Does anyone know where I am supposed to turn at a time like this? This is just the begining & already it’s too much to handle on my own. Any organizations that help newly handicapped people? Any advice on how to make my current home (on 2nd floor) more friendly to my disability? Thanks for your time.

  4. No more white cars at 7:26 pm

    My husband, oldest daughter & I do empathize regarding Chronic Pain and the undertreatment and lack of understanding that the medical world has for us who are experiencing it. My daughter has Chronic Reflex Sym. Dystrophy and each new injury (even a little bump, now) can leave her in horrible pain. Her nerve endings are loud alarms. My spouse broke his neck and back in a car accident and suffered many exams, some painful, before the fractures were diagnosed! There were other injuries, too, and each one was found as another was healed or in treatment. 15 years later, after a car accident in which I was the driver, my daughter (we were passengers in the first, with minor injuries), are now battling the pain of injuries to our backs and other body parts. The thing that truly makes me sad, is the lack of belief within the medical community, of how much pain a person is feeling and the unwillingness to help. I am fortunate to have found dr’s who do understand and listen; then we work out a treatment plan, but my daughter and husband have had long, bitter roads. Right now our lives are one day at a time.

  5. Terry at 11:33 am

    I too thank you Cynthia as for my 30 yrs I felt like I was the only one ..I’ve fought hard to hang on to my own identity & not let my pain become who I am/was ..It seems there is such a negative stigma surrounding the treatment of pain ..your accomplishments prove there is great strength is those who live with these conditions ..we tend to develop far greater life skills in order to overcome ..I was able to graduate Summa Cum Laude with a five year degree.. pain, the medication and all …I share that to inspire others you can pursue your goals… even if in a less traditional way …Believe in yourself and don’t let anyone make you feel you deserve anything less than the best.. in medical care …or in life…because each of us ARE human beings that matter….God Bless Cynthia..as you’ve shown us all & the world…. that is true..!!!

  6. Laura Beauchamp at 7:18 am

    Dear Cynthia: thanks for your article! As a caregiver of my daughter whose pain started at age 14, I can attest to the pain of caregivers also. My daughter only started receiving pain treatment at the age of 21, and she realized that the doctors’ fear of addicting a young person to pain meds sends across the message of “You’re not worthy to be treated for pain…you’re just a drug seeker.” As parents, our anger at the physicians will never quite go away. Their refusal to treat her as a teen forced us to buy illegal drugs to keep her from commiting suicide. We also resorted to mal-adaptive behaviors and are now paying the price for it.

  7. Doris Swertfeger at 7:18 am

    I share your desire to help others. I have had RSDS/CRPS for over 24 years and I do not see any professional help or concern in my local area. I was diagnosed in Houston, Texas. I have started a blog: thewondermentoflife.blog.spot.com to share my story. I was a single mother at the time and was determined to never give up. I experienced a near death experience and it has changed my life.

    I am now retired and seek to find/help others with RSDS/CRPS and/or chronic pain.

    There is hope in all things….but we have choices in the midst of our trials to find purpose on our journey.

    Thanks for sharing.
    Doris

  8. Melody Isaacs at 6:36 am

    I too suffer from CRPS aka RSD as well as PTSD after 7 surgeries on my knee and an infection post op my 2 knee replacement on said knee. After complications from the infection I had to have my 3rd and final total knee replacement. I have never been pain free since. The burning, constant ache, off and on swelling and temperature changes have been over bearing and at first I was told it was just the pain frrom recovery and would just take a little longer because of all the trauma to my leg. Well it never went away and it took my infectious disease Dr to finally say Melody I believe you have RSD! Once he spoke with my ortho then the light bulb came on and I was sent to the pain clinic for all of the testing yatta yatta. I was an RN and am now totally disabled. Thankfully they caught mine early or so they say and I am able to control my pain with natural things like excercise, diet, meditation etc and my Lord Jesus Christ. Wish I could say it was easy because it is NOT. It is a daily struggle to get through because it is not just the physical pain, there is the psychological pain to deal with as well. And then there are people, oh the people who look at you having a good day ( which does not mean you are not having pain it just means you are coping well at that particular moment) and make comment like ” Well you must not be hurting you are able to do this or that” Give me a break, Like Lou said above, We don’t quit despite the desire at times to just end it all!! We can choose to wither away and die or we can take a stand, bite our lips through the pain and LIVE! Thank you Cynthia for being an inspiration to us all!!

  9. Sharon at 6:32 am

    I was diagnosed with RSD in my right foot 25 years ago this fall, but I fortunately found a wonderful pain doctor (an anesthetist) who had heard about the condition and was able to correctly diagnose me. After 3.5 months on crutches I had a physical lumbar sympathectomy that, to this day, I thank everything in the universe I had, because I’ve been walking ever since. Seven years after that I hurt my left foot and had a chemical sympathectomy that…didn’t work quite as well as the one for my right foot. I’ve been walking ever since but the pain never really went away like it did with my right foot. Over the last ten years some pain has come back to both my feet, along with some swelling and mild discolouration, but I really don’t even think about it anymore. I just keep going on because I don’t have any choice. And I think that’s what people don’t understand: so many people with chronic pain keep going on because they *have* to, they don’t have a choice. Cynthia, you embody that ideal and I thank you for sharing your story; I hope I can afford to get the book at some point.

  10. Jackie White at 6:18 am

    I am the mother of a young woman who has suffered with Reflex Sympathetic Dystrophy now Complex Regional Pain Syndrome. She has been living this life for the past 12 years of her young life (she is 31). She was told so many times it was all in her head. I was told give her more attention and then she would be told again it was all in her head. She went into remission for two years and we thought everything would be good. She gave birth to a beautiful little girl. Then she twisted her ankle and the pain came back with a vengance. Within a month she was wheelchair bound as it had spread to both legs. When she was physically in a wheelchair we were still told it was in her head. She has watched from the sidelines as life has past her by. That little girl has been her lifeline and kept her from trying to leave this world of pain behind her. Today she still suffers with pain constantly and continues to watch as life passes her by while she sits on the sidelines. It is very difficult to watch your child daily suffer from this pain. We continue to pray for some relief and perhaps a cure to be found. I am definitely going to read this book. Thank you for writing it.

  11. Amber at 2:13 am

    I can’t wait to read your book, Cynthia! Having severe chronic pain for almost 7 years as a 31-year-old, my battle seems like it’s just starting, but I’m so thankful for those of you who inspire me to keep on LIVING and not give up! Also, I am astounded and in awe at the longevity of your relationship. John, you are also an incredible hero!! That is true love for both of you stick with each other through thick and thin! THANK YOU for advocating for us women who are often not taken seriously even when we are in severe pain. I have plenty of horror stories myself, but I also thankfully have a few stories of medical professionals who have treated me with dignity and respect. I have not had medical insurance for 4 years, due to my pre-existing condition and loss of job. I feel this is a big issue for us with chronic pain and would love to see change happen for greater access to medical care for all (I’m sure a lot of us would!). Blessings to you on your journey.

  12. Julie Anna Bloodworth at 2:53 pm

    This is a wonderful article that touches me deeply. It really resonates with me as I have suffered with Chronic Pain Syndrome due to “Failed Back Surgery Syndrome”, Neuropathy, and Fibromyalgia for almost 12 years now. It totally changed my life and changed ME in ways that I would have never expected. I too utilized “mal-adaptive” behaviors, striking out not only at myself but everyone I loved and the people that I was friends with. I was blessed that my husband and family stood behind me even though they couldn’t understand the intensity of my pain and how much it really affected my life. Luckily after many procedures and a second “big” back surgery things have improved. I am able to walk a mile a day and take up some light housekeeping and cooking again. My Daddy always told me to have faith that things would improve and although it took over a decade, it did. Blessings to all out there who suffer, often needlessly due to physicians who are reluctant to treat pain as it should be treated.

  13. Lou Gardina at 2:30 pm

    I am 62 years old ! When I was 19, I first noticed my arthritis or fibromyalgia. I don’t know for sure which it was because they didn’t know about fibro back then ! I have Fibromyalgia, Osteo-Arthritis & Ankylosing Spondylitis. In 1989, in a horrible auto accident, I suffered a broken back ( along with other broken bones & injuries ). I have been completely disabled now for over 15 years. I probably worked far longer than I should have I’ve been told, but I believe that we ” never quit “. My life has been filled with pain, physical & psychological, the latter being more difficult to cope with. Throughout it all, I feel as though I have still been lucky, because I could have had an upbringing that would not have been so preparatory for what my life has become. The main lesson to learn from all this has been to ” Never Quit “… , no matter what ! I am thankful for that, for without that lesson, I would not be writing this right now !

  14. Autoimmune Pain at 2:01 pm

    Cynthia, you are a hero in the true sense.