Living in Pain - CRPS

so wonderful to see someone with the same condition as me being so positive. I'm a fighter too staying positive and fighting against losing muscle. keep fighting women your not alone we will overcome this awful disorder!

She is an awesome and beautiful warrior! Much love

You are an awesome brother! I have had this for 6 years now. I'm undiagnosed to this day! It has spread now to be all over! Pretty much full body. I'm still on a mission for a diagnoses for sanity. I have no doubt what so ever! God Bless you and your sister!

I have CRPS also, and it's excruciating, it's a hidden disability which is poorly understood. I have it in my legs after an injury and operation. It flared up after that. Well done for posting your video. It's a perfect description of the syndrome and highlights the need for better understanding of the condition

I think it's beautiful that your family supports you!

I'm blown away. Her brother loves her enough to ADVOCATE for her by doing a video. Typically, families fall apart and the disabled person is not believed nor is there any interest about their life. Shoved to the side. Worse, the caregiver, possibly a spouse, is shoved to the side too. And we wonder why the divorce rate is 75%? The take away from these video's is wanting to be believed and included. To be treated as a valuable person like we all are. How fortunately Sara is to have such a loving brother. I know my husband loves me, and he shows it. But if you asked me if I felt overall loved? Absolutely not! And most can fill in the blanks of WHY! This is amazing to see the love between these siblings. Not usually seen... I am an advocate and have CRPS, TBI, DYSTONIA, AND OTHER ISSUES WHEN THE BRAIN DOESN'T WORK WELL. Even tho, I'm accused of things I do not do, I also push myself because I know if I don't... I will waste away. I don't sit and think of silly things to do or say. I am busy! I have a life, but it wasn't the one I choose. Those that are around us over days at a time, are amazed. Other's think I'm lazy or whatever. It takes strength, and I wonder if those who do the accusing would have the strength if in our shoes. I'm asked to do things that one usually would be asked, but since I'm fine.... Yet, if I need 15 minutes... way to busy for that! But it's better to do as she mentioned... keep your mind clear and do your best. It makes me sad to know that I'm a "throw a way", a "nobody" (unless needed) by those who one would think would care. I don't get it and never will. And in another group it was shown that the worst offenders were "Christians". lol. I do know that I would call my friends and family that name...but somewhere the love got old. So it hurts real bad when I'm getting the sermon and wonder if they think about what was said. "I'm too busy"? I'm too busy! Keep drowning and "I'm too busy". That is why I know LOVE when I see love. I do not expect people to jump when I speak. When we are desperate or need help, the answer is NO... but then then we get asked soon after.... "Can you....?" Please message me if you would like to participate in a short survey, and the docs on Linked In and other media's are excited. Takes 5 minutes unless you decide otherwise. Stories are always welcome. The FB page is an open page because it is educational . That's the idea! If you want to tell your story without your name, then send it via email or messenger. Hope to hear from you! Cathy Carlile Turner (personal page) Chronic Pain Education for Patients Friends and Family. (FB page) No joining, just Follow. YOU ARE BOTH AN INSPIRATION!

I have CRPS in my arms and hands. I've had it for 21 years now, after a neck injury. So many things Sara said resonated with me. First, you've got to make a conscious decision to live your life despite this disease. You've got to be honest with yourself about your limitations (and do things like cut back to part-time work), and you've got to listen to your body. When you are having a bad day, you have to give yourself permission to take it easy that day. CRPS is awful disease, but it doesn't have to ruin your life. Thanks for the film - and God bless you and your family!

Hi also have crps in left arm and right shoulder I hate so much I live in London would not wish this on anybody glad to see someone on u tube is talking abut the condition lots of love keep vloging Sharon Brown ❤️

I am 58 and with crps I have just seen this story I know now I am not on my own

I have CRPS in my left arm & I know YOGA is saving my body & soul. Keep up the hard work & don't stop. CRPS doesn't, so we shouldn't. We shall soldier on & face the battles with a stubbornness that is unrelenting. We will & shall prevail despite all obstacles in our way. NAMASTE

I have a friend who was diagnosed with CRPS at 11. She was also diagnosed late, and doctors tried for over a decade to try to manage the pain. She decided on a below knee amputation and is now pain free. She was not a functional person towards the end of her CRPS, and everyone now agrees she is finally living.

I'm a fellow CRPS warrior too. You are such a great brother to get your sisters story out there. alsi, your sister is an awesome warrior to get up every day, exercise, and hold down a job! I've had CRPS for over 6 years and it's been a living hell! So glad i have Jesus in my heart so i won't burn here and in the after life...lol! Please tell your sister she is so courageous and my hero! We will continue to pray for a miracle or a cure, which will be a miracle!! God bless you both!

In the US we do not have medical care for those that need it most. I have had CRPS since 1994. As a pre existing complex medical rare disorders, I do not have access to care. They will not treat my pain. Murica is a bad place to be ill. I have Ehlers-Danlos Syndromes and have had pain since birth. I am 61. Thank you for your love of sister. I have a brother 3 1/2years younger than me too. Love and thank you for reading this.

Ive just recently been diagnosed with it but some doctors dont take the diagnoses. It gives me alot of hope seeing the wonderful life she lives with everything she goes through and has gone through. Im trying my best to stay strong through all this. thank you for making this video and sharing some light on what we go through and sharing your sisters story with everyone.

Thank you so much for this. What an awesome brother she has, to learn about her condition and make this and share it. I will share this and hopefully it'll help others understand what I live with.

Stay strong! You are not alone. So much of what you said is how I am, mine is a bit different yet the same. I really hope more people see this video. This disease been around too long not to have more known about it, it frustrates me.

Hi. I happened on your video because I'm having a really difficult time coping with my CRPS and i was looking for help. You and your sister have really inspired and comforted me. I realized that I CAN live with this...and that's both the inspiration and the comfort. It's been difficult since I was diagnosed, going on 3 years actually having rsd now. I appreciate and wanted to thank you.

I have crps this a great informative realistic video about life with crps x

In 2010 I was diagnosed with RSD/CRPS after a trauma to my arm. Since then it has spread to my jaw, and my legs. Before drs kept telling me I’m crazy, I’m imagining it and so on. I was always told you LOOK fine, nothings wrong with you. They did spinal nerve blocks and was about to do a spinal cord pace maker, I refused it.I was put on highest pain meds allowed, was on 5 seizure meds as well. Nothing worked for me.No one knows the pain except us diagnosed with it. Life is very hard with it but I trek on, I refuse to let it run my life and control every aspect of everything. We with RSD/CRPS we are truly fighters and warriors.

Thank you SO much for sharing your story with us. Continue living your best life. I’m right there with you.