A brave Chivette needs our help. This is Gina’s story (20 Photos)

It all began in March of 2011, when Gina Mercieri was t-boned by a Chevy Truck that ran a red light going 45 miles per hour. Luckily, 27 year-old Gina walked away with only a hairline fracture to her left arm. After 8 weeks, Gina's bone had healed but the pain in her arm had grown worse. Doctors told her the pain was in her head. Gina knew better, "It was as if somebody was filling my arm with lighter fluid and lighting a match."

After bouncing around from doctor to doctor for a year, Gina finally got a diagnosis. The fracture to her left arm had triggered the onset of a disease so rare and sinister, its nickname is the 'Suicide Disease.' Complex Regional Pain Syndrome (CRPS).

Complex Regional Pain Syndrome is a chronic nervous system disorder that can affect any area of the body. It often occurs with a minor injury to the arms or legs. When left undiagnosed or untreated it can spread to the vascular systems, cutting off circulation to all parts of the body, including major organs. There is no known cure.

On the McGill Pain Index CRPS is ranked 45. The burning pain somebody with CRPS experiences trumps not only childbirth, but also the acute amputation of fingers and toes. Gina experiences this degree of suffering on a daily basis. The episodes are so excruciatingly painful she will often black out.

If CRPS is caught early, it can be contained. The year Gina lost in misdiagnosis cost her dearly; living with CRPS has become increasingly difficult. The disease spread from her left arm to her left leg, then quickly to her right shoulder. It wasn't long until CRPS began its assault on her immune system. Gina's immune system tries to fight CRPS as if it were some sort of infection. The disease has invaded her respiratory system, causing shortness of breath and absent siezeures. Even worse, it prevents her from sleeping. Gina no longer experiences REM sleep. Without sleep, Gina's immune system cannot recover. Her body is fighting a war against an invisible enemy and the gas tank is perpetually empty.

Three months ago CRPS accessed Gina's nervous and circulatory systems, which causes progressive damage to her internal organs. Gina's digestive tract is obliterated. The physical act of eating food is nearly as painful as its digestion. Her short term memory is fading. Gina will randomly lose her sight completely and without warning.

Living with CRPS is a contradiction in terms, it's not really living at all.

For many with this disease, the only release they see is suicide. Last year, Gina joined a support group for patients with CRPS. At the time, the group was 11 people strong. That number has since whittled down to eight. The last incident, a man ended his life by throwing himself in front of a bus.

I was nervous to meet Gina. I worried that her flight from her home in New Hampshire the evening before would have exhausted her. Do I hug her? Would that hurt her? Can she walk ok? Gina arrived at theCHIVE offices walked up and gave me the biggest hug, "I'm a hugger" she said. The only thing I could think to say was to tell her: "Hi, Gina, we're here to get you the help you need."

Her response was quick: "Thank you so much. But I'm here to get the CRPS sufferers and undiagnosed sufferers the help they need. Only 4% of the medical community has ever heard of CRPS, and your story about me will change all that."

Gina showed me her TENS (Transcutaneous Electrical Nerve Stimulation) unit: It's a series of electrical cords she "plugs into" her left arm which send electrical impulses to nerves and help circulation of the limbs. One hour on and one hour off, all day every day.

Blood circulation is everything to Gina. The CRPS causes restricted and erratic blood flow to her extremities. Many sufferers (that's the term she uses, "sufferers") will lose limbs because of the disease. The TENS unit alone doesn't get the job done. Gina must stay constantly mobile. Physical activity to Gina is the most painful thing she can possibly do and yet without it her body would cease to circulate blood properly. She would lose her limbs, and she would die.

So Gina goes jogging. The recent spread of the disease to her lungs has made such a task even worse. She grimaces through the sand on Venice Beach but never stops, pushing herself forward despite the immense pain. We all watch from theCHIVE balcony in disbelief. When it's all over, Gina collapses. Her body is not only physically exhausted, but her lungs are also refusing to absorb oxygen. Gina told me later, "The worst is suddenly not being able to breathe, the respiratory attacks. It's not like gasping for air, you simply cannot take in air. If I'm home alone I can't pick up the phone and call for help. That's the scariest of all. The pain alone won't kill me, but not being able to accept oxygen will."

To treat her illness Gina is on a cocktail of medications, 28 pills in all. Gina hesitates when talking about all the pills. She was never much of a pill popper. I get the feeling she hates the daily pill regimen nearly as much as her disease. "Do you skip certain pills you've been prescribed," I ask? "I'd rather feel the pain than become a zombie if that's what you mean. There's got to be a better way." To that end, Gina has become a great student of CRPS. Ironically, Gina was a neurology major in college, providing a solid foundation for her future self-education. She has become a walking encyclopedia on the disease. "I do everything, I even take my own blood samples. I have my own file. It's a whole lot better than watching a doctor quietly sneak into another room and Google my disease."

In her research Gina has discovered new treatments that give her hope for the future. Treatments we can help provide. Six months ago, Gina discovered Hyperbaric Oxygen Treatments (HBOT). The pressurized chamber delivers rich oxygen to every region of Gina's oxygen-starved body. After a half hour in the chamber, " I feel my arms and fingers start to tingle as Oxygen arrives. After an hour I feel like I could do cartwheels. It was like the disease was gone." The HBOT treatments have positive, lasting effects. For days afterwards Gina is able to function like a perfectly normal person. But the FDA has not approved HBOT treatments for CRPS. Insurance doesn't cover the treatment and she is not allowed in hospitals' chambers. "Like having my nose pressed against the glass, looking in on help I can't have." Instead she flies to the Deerfield Beach Center of Hope in Florida. Deerfield is a freestanding clinic with a Hyperbaric Chamber. It's a long trip, but it's worth it.

Finally, there are a number of functional restoration programs that implement a myriad of interdisciplinary therapies over a 6-8 week course. Incorporated in the program are specialists ranging from physical therapy to pain psychologists trained in chronic pain management. The goal is to provide CRPS patients the best opportunity for recovery and to arm them with the training they'll need to overcome their daily anguish. Brooks Rehabilitation Center in Jacksonville has one of the best Neuro Recovery programs in the world. The costs of an FRP Program can exceed $40,000, not including travel and hotels.

Finally I asked: "Is remission possible?"

"I don't know, John. Maybe. But what is possible, I'm certain, is these treatments can improve my quality of life. If I got 30% better out of all this, what a difference it would make."

The goal has been set at $60,000. Gina is here at theCHIVE office watching it all happen. I'll bring you updates as they arrive. As many of you can tell, since the new year began, Chive Charities is surging, Random Acts of Kindness on theCHIVE have become a staple of our community spirit. And, with your support, we're just clearing our throat.

Over the past year, Gina's body has been closing in all around her. Each day, Gina wakes up to unimaginable pain, the sum total of which is the equivalent to having ones fingers amputated. It is a sort of warped 'Groundhog Day' from which there is no escape. Today, the Chive community can rally around a kind and tender soul and, with outstretched hands, open her world back up again.

Donate to Gina RIGHT HERE.

UPDATE: $25,000 in less than 30 minutes. Gina is reading the comments, smiling. We're blown away.

UPDATE #2: $50,000 in less than an hour. The home stretch, let's do this!

UPDATE #3: $60,000!!! Crushed the goal in 1 HOUR. Chivers, I don't know what to say. Gina is, "Speechless." Many tears here at the office.

Before I published this article, Gina handed me a note. It read:

“This illness stripped me of everything and left me dependant, depressed, and hopeless. This is no way to live a life, I know. Y’all have no idea how humbled and blessed I feel to have the Chivers back me up, y’all are heaven sent. Thank you for this second chance at life.”


Gina’s Twitter Machine.

UPDATE: $25,000 in less than 30 minutes. Gina is reading the comments, smiling. We’re blown away.

UPDATE #2: $50,000 in less than an hour. The home stretch, let’s do this!

UPDATE #3: $60,000!!! Crushed the goal in 1 HOUR. Chivers, I don’t know what to say. Gina is, “Speechless.” Many tears here at the office. Will update w/ pics in the DAR.

  • Namaste

    I suggest looking into some alternative/traditional medicine to help with the pain management. They can address some things that western medical practices overlook or simply won't/don't address. I suggest BodyTalk, google it. There are many practicioners in Miami, but I would suggest Lynn Teachworth in Orlando and John & Esther Veltheim in Sarasota, they are the creators of this discipline.

  • Christy

    Gina (and Chivers),

    God bless you. As a fellow CRPS sufferer (to borrow your term), I understand the immeasurable pain you're in. I was diagnosed with CRPS in my right leg (back before it got that new name, it was originally called Reflex Sympathetic Dystrophy or RSD) in 1997. I was 13. Against all odds, I've been able to contain the spread of the disease and localize it to my legs only; as such, a spinal cord stimulator was surgically implanted in my body in 2006 that overrides the disease and takes care of most of my body's pain management. Reading your story, I can't believe how lucky I have been in battling this disease.

    I'm so glad you're out there spreading awareness for CRPS, and I hope your treatments are an amazing success. I am praying for your recovery – remission does exist, and I hope you can get there. And remember that even if you don't feel that way, you AREN'T broken and you ARE deserving of the love and support you get from those around you. I tried to push away my boyfriend at the time of the spinal cord stimulator implant to try to "save him" from having to deal with the disease. He's now my husband, and the person who brought your article to my attention!

    KCCO ❤

  • Matt

    Tried to donate, but the threshold is met. Signed up for Green Level with Chive Charities though, so others can KCCO as well!

  • JulieAnneT

    What an amazing woman! Gina, you are an amazingly strong person, and you humble me! I will remember you whenever I think I have it hard, and stop whining! You have not only touched my heart, but my negative thinking as well! I hope and pray that you receive some peace in your life! Thank you for sharing your story with us!

  • connie waltz

    There is a free standing hyperbaric center in Columbia pa that treats CRPS http://www.hboxygen.com

  • http://www.luciemacarthur.com LucieMac89

    im a broke artist but im donating what i can! KCCO Gina, stay strong

    • http://www.luciemacarthur.com LucieMac89

      boo, im too late… well its going to the chive fund. best wishes.

  • https://www.facebook.com/shawn.mcdonald.3762 Shawn McDonald

    Gina, I hope this helps in easing your pain. Hang in there. You are incredibly strong. A true inspiration. Jason I know how hard it is to see the person you love the most in the world in pain on a daily basis. My wife suffers from MS so I understand how hard it is for you also. Good job young man. Take care you two KCCO!

  • Pete

    I wish I could have donated, but yall beat me to it. Gina, you are one of the strongest people out there and stay strong. Jason you too are an amazing man, its unfortunate but I feel many people anymore would have taken the out but you didnt which is awesome. Best of luck to the both of you and I hope that this helps KCCO.

  • craig

    Chive, here is an amazing woman, so full of energy and positive thoughts and feelings. Let's go for $120,000!

  • Jose Maria

    Here's to gina, KCCO from a Mexican chiver!!! just make sure to keep on going the way you are!!!!!
    I'll help in any way i can!

  • Mary

    I'm just a poor college student, but if I'd read this yesterday, I would've donated in a heartbeat. Gina, thank you for your spirit and strength! I'll be praying for you!

  • http://www.palookavillepost.com/2013/02/21/kudos-to-the-chive-nice-job-helping-someone-in-need/ Kudos to the Chive…. Nice Job Helping Someone in Need : palookavillepost.com

    […] all began in March of 2011, when Gina Mercieri was t-boned by a Chevy Truck that ran a red light going 45 miles per hour. Luckily, 27 year-old Gina walked away with only a […]

  • xoxo

    Perhaps there is some place people who wanted to donate but could not to where the money goes for research and cures and/or other people affected. Perhaps Gina knows of such a place?

  • Yoena

    My prayers to you and your cause! KCCO from Florida! Im in! 🙂

  • Krissy

    #21 Amazing strength! KCCO Gina! Love from NY.
    The Chive community never ceases to amaze me!

  • https://www.facebook.com/israel.weaver.12 Israel Weaver

    Mrs. Mercieri you are an outstanding example and inspiration to anyone who has ever faced seemingly insurmountable odds. Keep going, everyday, no matter the odds or the pain, one step after another.

  • http://hyperbaricmedicalsolutions.com Henry K. Prince, MD

    I’m moved by your story of courage and commitment to fight CRPS. We have had great success with HBOT at our private Long Island, NY facilities – Hyperbaric Medical Solutions – for the treatment of CRPS and understand the severity of this disease. We have found that HBOT is one of the few modalities that offer a nontoxic, safe, and effective therapy for CRPS. We wish you the best in your fight against this crippling disorder.

    Henry K. Prince, MD
    Medical Director

  • TAG

    Our 13 year old daughter was diagnosed with this cruel disease almost 3 weeks ago (after 5 M.D.s & 3 trips to the emergency room. Fortunately, this was within less than a week after the injury that triggered the syndrome. Physical therapy began the day after diagnosis. Even with early treatment & multiple pain meds, there are times when my daughter, a talented, tough and determined young woman, cries and screams "My bones feel like they're being broken and ripped apart." We WILL beat this, and she will be able to return to school and the activities that she loves. Fight on, Gina. We love you. Thank you so much for raising awareness of this pernicious affliction that continues to baffle the medical community and torment its victims.

  • http://www.facebook.com/caroline.kurzydlo Caroline Kurzydlo

    I am also an CRPS sufferer I was diagnosed after a back surgery didn't go as planned it started just in my foot and has traveled all the way up that leg and has transferred to my other leg as wel. Like Gina's TENS unit I have a stimulator however it is implanted in my spine called a spinal cord stimulator. In a week and two days I will start a two week treatment of Ketamine infusions for six hours a day four days each week for a total of 8 days, the point of this is to separate the brain from the rest of the body and hope that it forgets about the pain it has worked for a time in the past. This will be the 7-14 infusions done. CRPS is a disease that not many people know and I am so grateful that you guys are spreading the word about it. I wish Gina luck we all need to stick together.

  • http://twitter.com/kendallthoreson @kendallthoreson

    I have RSD/CRPS as well. Your story is an inspiration and I would love to connect with you, share you my story, and help you spread the word. Let me know if you want to connect!!!

  • http://twitter.com/kendallthoreson @kendallthoreson

    I have RSD/CRPS as well. Your story is an inspiration and I would love to connect with you, share my story, and spread the word of CRPS! If you would like to connect, please let me know!

  • http://twitter.com/kendallthoreson @kendallthoreson

    I have RSD/CRPS as well. Your story is an inspiration and I would love to connect with you, share my story, and spread the word about this terrible condition. Let me know if you want to connect!

  • Brad Thoreson

    Hang in there Gina. Our daughter suffers from the same condition and was a DI soccer player when she was injured at age 20. She went through aggressive physical therapy, acupuncture, spinal blocks and none worked. She finally received a spinal cord stimulation surgery and has done much better since. I cannot believe how tough you have to be on this one. I will pray for you and fellow sufferers every day and for the miracle of remission. God bless you.

  • juebele1

    I just got diagnosed with CRPS about a month ago. Mine was also triggered by a car accident, I war rear-ended between 4-6 times in a large accident. I got the same go around. It is all in your head. You are just drug-seeking. There is nothing wrong with you. When I got my diagnosis, I cried. First, because I finally had a diagnosis. Second, because of what my doctor told me. I am a nurse. I wasn't sure what to do. I can't work on pain meds. I don't want them. I have had 3 blocks performed and I have a neurostimulator that I am to use for 40 mins. every 4 hours. I use to be so active. But now, I only have maybe 25% use of my left arm. Your story is inspiring. I hope that you get the treatment you need. Best of luck!

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