“Trial by Fire” The movie based on a disease you’ve never heard of

SHARE
Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy (RSD) is a disease that is not widely known unless you are one of the approximately 1.5 million to 5 million people affected worldwide. CRPS is a progressive disease that can strike any person and doesn’t discriminate against age or gender.

 

Typically CRPS/RSD begins after an injury and it is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System.
CRPS is thought to be caused by damage to the central nervous system which is composed of the brain and spinal cord and from there the damage will progress to other body parts.

 

For those who are living with CRPS/RSD the pain they experience is characterized by prolonged and or excessive pain accompanied by a burning sensation some other symptoms include; changes in skin color and texture, abnormal sweating from the affected area, changes in hair and nail growth, stiffness in the joints, muscle coordination, and abnormal movement in limbs such as tremors or a twitching of the limbs.

 

Celebrity Chef Charles Mattocks, who is also a best selling author,diabetes advocate and director is creating a film based on this condition. Inspired from his moms diagnosis he was moved after researching and hearing the countless stories. Charles has started shouting and the film will be released in 2015 in time for summer.SONY DSC
He will work the film festival network and a TV release of the project next.

Chef Mattocks is passionate that this condition needs a voice.

 He has met some amazing people in this community and these folks need their stories to be heard.
The story will follow Charles’ mother as he tries to help get with treatment. It will also follow other key stories such as a 14 year old named Natalia. A young lady who has her whole life ahead of her yet this disease has changed her young life forever.

 

The film will focus on some treatments that have worked and the the emotional side of families affected.

 

For more info visit the site at http://trialbyfiremovie.com.
fire1
  • https://www.facebook.com/groups/JGForgRSDCRPSsupport/ Marie Conway McGowin

    So thankful for your passion and determination to help raise awareness about RSD/CRPS! I support you 100% and hope everyone else will feel the need to also! Keep fighting the good fight! Putting out the fire for us all! Thank you Charles!

  • Angie Gerben Ivey

    My mom suffers with this and many other family members. Thank you for bringing light to this condition. Its terrible to watch someone so full of life have it change. My mom always days “mind over matter!” She is my inspiration!

  • Diane Kordek

    Suffering from CRPS since an injury on 9/11/2008 I can tell you it has been an extremely difficult journey initially finding doctors and treatment. I’m so grateful to Charles Mattocks for caring enough to undertake this enormous task of trying to bring awareness of CRPS/RSD to the world. This is touching hearts, and has the potential to help effect a change, a positive change in so many lives. Not just the lives of those with CRPS but our caregivers, loved ones, spouses, friends, everyone who this disease touches and cross touches. Charles Thank you for being the person to bring RSD/CRPS into the light for the entire community… We are forever grateful

  • Shabita

    Thank you for bringing the issue of chronic pain to the forefront and putting a face and voice to the millions of people that suffer with this. I’ve been diagnosed with chronic pain, specifically central sensitization post surgically since 2009 and it can be a really tough, lonely journey for many. As a pharmacist and chronic pain patient I know both sides of the fight from the healthcare provider perspective and from the patient perspective. A lot more needs to be done to help chronic pain patients and your documentary is a step in the right direction…thank you!

  • KathyF.

    Charles – thank you so much for taking this on. You will be helping so many in the RSD community. I was diagnosed with RSD in lower extremities. I’m also diabetic and have Fibromyalgia. Everyday living is hard – very hard. My legs feel like they are on fire constantly and the slightest touch down there sends me into a frenzy. Thank you from the bottom of my heart.

  • Gracie Gean

    RSD/CRPS is exceptionally difficult to understand because it is typically an invisible illness, meaning that one cannot tell that we are sick by glancing at us. We are at home in bed when are having a flare. We are not posting pictures of ourselves on social media when we are suffering. We don’t want sympathy. We appear to look great to the masses. This disease is not routinely taught in medical schools so even most doctors do not understand us. We stick together for understanding and support. We are a strongly-bonded community. What we really want and need is mass awareness on a global level in order for more funding to be focused on research and a CURE! This disease has been recognized and adequately documented for 150 years with very little progress in the way of treatment. As a community of the silently suffering, we have banded together. LET OUR VOICES BE HEARD!

    • Mary Walcott Conrad

      Well said Gracie…gentle hugs~ Mear

    • Dusty Michelle Smith

      My thoughts and words exactly! Thanks for posting

  • Jamie Mcatee

    Thank you! By sharing your mothers story, you are also sharing my story! God bless

  • Barb Fluck

    My daughter suffers from this disease now 6 years.She has tried everything available.She has full body with organ involvement and cannot walk..She is getting ketamine infusions which has helped her pain more than any other treatment she has had.She has severe dystonia.tremors. which twists her body whichever way it wants to.Very,Very painful.Thank you Charles for all you are doing to get this word out about this devastating disease.The community needs this so badly,

    • Diane Kordek

      Barb, Thank you so very very much my dear friend for taking the time as always and participating in a RSD United idea :-) to get this Film out there….I know how tirelessly you work at trying to get help for your precious daughter, hopefully Charles Mattocks Documentary is going to bring awareness and help to effect changes for so many! Love you Barb, as you know

  • Kimberly

    RSD/CRPS is a horrible disease .. its a disease that you cant see … Its a disease that sucks the life out of you … You loose everything , Your life your health and most if not all your family and friends …. There isn’t a cure … We need to bring more awareness to this disease … I went from working 60+ hrs a week and attending school full time , to being a home bound person .. The only people that understand is the ones that have RSD … PLEAE HELP US GET AWARENESS OUT … WE NEED HELP ..’

    • Diane Kordek

      Kimberly, what can I say, I have watched you suffering, as a RSD United member and someone near and dear to my heart I love you and thank you for taking the time to post…I know how hard it can be for you at times …Your an awesome amazing person! Love you Big time!

  • Nancy Cotterman Crps Pip

    I have had CRPS for 19 years. Nineteen years of non-stop pain 24/7. It is so frustrating that most doctors do not understand let alone family and friends. Our voices need to be heard!

    • Diane Kordek

      Nancy,
      There is No One I know that has given as much as you to this community! I’m so grateful that Charles Mattocks was able to find and work with you on this documentary. With your help, guidance, and compassion hopefully this will lead to awareness and wonderful things for the entire RSD community….and Lord Knows I will keep Charles Mother in my heart and prayers especially.

  • Emily

    Thank you so much Charles Mattocks for the awareness you are bringing to this horrible disease. Your documentary Is going to help so many, those that have already been diagnosed, those that suspect they may have this and those that care for patients/people who have CRPS. Complex Regional Pain Syndrome is a very complicated diease and it is difficult to treat. I was diagnosed in 2011, almost 4 years ago. There are 2 Types of Complex Regional Pain Syndrome, I have both Type 1 in one area of my body and Type 2 in another area of my body. I just learned that I have the 2 difderent types a month ago after seeing a specialist on the East Coast (I live in Arizona). All my doctors here just assumed it was a spread from the orginal injury. I was told it is even more rare having both types. My point to bring up my history is to show that there are not many doctors at least in the United States that have a “real” understanding of this complex disease. Bring awareness and education will hopefully not just help patients it will also help doctors/specialist. This will allow more patients to be treated with more up-to-date medications and treatments. It will also prompt insurance companies to help pay for some of these treatments as they are very expensive. A lot of people/patients w Complex Regional Pain Syndrome end up on social security disability bc of how disabilitating this diease is. We have a difficult type covering the basic medications much less some of the IV treatments.

    As you can see its just a downward cycle and what we need, those of us that have CRPS, those that suspect they have it and those family/friends (caregivers) is awareness so that we can have a better quality of life, lessen the pain and complications that come w Complex Regional Pain Syndrome.

    Thank you very much Charles Mattocks, Trial By Fire, for all you are doing, the CRPS Community is very appreciative for it all. It is a specially heart warming that this was prompted by you trying to help your mom that is also suffering from CRPS.

    Thank you, Emily B.

    • Diane Kordek

      Emily B…thank you for supporting this Film RSD United style…You have always contributed so much to our support group and here you are making a difference again by making your voice heard…Its CRPS/RSDers like you that even though you suffer daily, you put it aside to try and help in whatever way you can. Your amazing Emily! Charles Mattocks with support from the entire community can only be successful….Prayers for him, his mother our community and success

      • Nancy Cotterman Crps Pip

        Thank you Diane! We are both positive thinkers.

      • Emily

        Thank you so much for all the kind things you said Diane, it brought tears to my eyes. United took me in when I needed yall the most, almost 4 years ago. I love you all and I am so greatful for all yall have done. Thank you Diane, Kristen, and Nancy and thank you Charles Mattocks for all you are doing. ♡

  • Daniel Jimmy Sixeye Matthews

    I suffer from “the suicide disease” and “fibromyalgia” i think its good that we can all come together and help each other out. When you tell people they think its all made up, but some people google it and try to understand it. My cat gives me strength to get through the day. The thing that sucks is the big pharmaceuticals companies are making so much money from people with chronic pain so a cure for these diseases is not in their best interest. Chronic pain sucks but out there somewhere somebody loves you and needs you.

  • Shannon Woodall

    This is just… no words. My daughter first had symptoms after a gymnastics accident when she was 8. She was not officially diagnosed until this year, at the age of 13. There was just no one around that had any idea what this was or how to deal with it. So many “she’s faking it” or “it’s all in her head.” More information needs to be out there so that people don’t have to suffer through not just the horrific pain but the disbelief they get even from the medical community. I will definitely be spreading the word about this film! Thank you!!

  • lauralee

    Thank you Charles, for taking on the challenge of being our voice..of bringing much needed awareness to light and having the compassion, drive and perseverance to see it through. The challenges of this disease reach so far beyond our own lives that is is beyond the average persons comprehension what we go though..from the 24/7 relentless pain to the loss of function, to the begging for donations to be able to seek treatment that can help our pain….This awareness will help not only us with treatments, but also help our caregivers, friends, loved ones and the Dr.’s trying to care for us.. With so few in the medical profession even knowing about CRPS, this movement will hopefully be the stepping stone to providing them with the much needed education. We are a family of fighters that daily lift each other up from our emotional falls and darkest moments battling this horrendously painful disease. Our strength is tested every day and there are many time we are only have each other to help us take that next step to push forward. We are grateful for your passion and thank you for being a bright light that we so desperately need.

  • Sandy Lewis

    There is already a movie named this – google it. It’s about people who were physically burned. Perhaps Living With Fire might be a better name for us?

    • Jami Volk

      I saw the same thing…just makes it confusing.. People will end up being directed to that film when Google search is done so will get more awareness as we sit and suffer…. The title needs to be changed