I too have suffered with RSD/CRPS1 for 7 yrs. Dr's had me on insane amounts of opiots and benzos along with countless spinal injections. My life crumbled. I was hopeless. In Nov., I found Dr Peter Pretzkop in CA at BFC Pain Track. When I arrived my right leg was blue, cold, useless and oh so painful. It is now pink, warm, works just like the other one and I am drug free! I found hope and want to share it! What a miracle it is to have my leg back and my life back. If you suffer, look him up.
i have rsd. i hate sitting down and trying to sleep because my leg jerks alot, and when i walk, i hyper extend my knee backwards so i don't fall. it almost makes me cry because i can't control it and my leg always hurts and feels tired.
This video really touched me. I have the same condition and have watched my life change drastically since it began when I was 13. My entire personality has changed. I feel like I'm not the person who I could have been, but I'm working on it. The pain can make me cynical, depressed, and even jealous of other people. I'm very thankful for the internet, where I connect to other people who suffer from debilitating diseases. I spend most of my days in bed, so this is my lifeline. GOOD LUCK.
This movie was very touching, it also makes me scared. I was diagnosed with RSD/CRPS 5 years ago and amazingly the symptoms went away for two years! I was really blessed cause I was having a huge problem with pain! then it started back up this last year luckly Im still being as active as I can be staying in show choir! I also have a sister that has the same thing who has club foot and is in Stage 4 it is really hard to see get through the day the way she does... I just hope that I dont get there
Dear Samantha, My English is not so good. But i hope you can understand me. 1997 i was diagnosed whit RSD and we called it in the Netherland CRPS type 1. It was comming after a stupid accidend on my work. Now we are 14 years, futher and i'm laying the whole day on bed. I know what you have been trough. And, it's horrible. The pain is some times killing you. but i see on the pictures a beatiful woman who see the light in here live also as i do. I wish you al the best i can. Whit love Alma&Storm
i was diagnosed with crps about 2 years ago now. so i can understand her situation. anyone with this disease will understand that the pain is unbearable at times. try to strengthen your mind to cope with pain, rather than lashing out and punching everything in sight (like myself). keep pushing on hun!! i hate seeing this diagnosed on other people :((((((((((
I was just diagnosed with crps just 3 months ago. Although I have only experienced the pain for a few months, I am sure all of us with crps would say ten minutes is too long. God bless you for making this video. Keep the faith and know God is there for all of us. When I am in the worst pain I ask God to put his arms around me and hold me. Merry Christmas to you and your family!!!!
thank you for this now I know I am not alone its it brings tears to my eyes to know someone else has rsd /crps other then me. amy life has been turned upside down i am in pain all the time to the point where I cant walk i use a cane all the time I do i hide my pain just to get through get through day so I dont upset myfamily. I was a very active person before I got hurt. its been a year now and my doctors have given up on helping me with this stay strong !!!
Thanks for sharing. I too suffer from RSD , dx'd July 2010. One of my biggest struggle is maintaining the once active life I used to lead. Stay strong. You are not alone. Theresa
I also have rsd. I was dx'd 7 years ago & I really struggle with missing the life that I used to have & the guilt I feel because I am missing out on so much of my children's lives. I will say a prayer for you.....you're not alone!
I also have RSD and am very aware of the total loss of you life you once had for me my biggist struggle is trying to still be a happy fun mommie to my 2 small children i was diagnosed with RSD summer of 09..your are so very very brave to share your experiances ...Gentle hugs
So brave to share, The smiles and joy before the pain and suffering. I've had RSD since 07, My biggest struggle still is mourning the person I use to be. Gentle Hugs!
i too have RSD. It controls all aspects of our life. It makes me feel less alone when I see or read about someone who has the same symptoms & whose limbs look the same as mine. Thanks for sharing your post.
My sister seems to suffer with this disease... The maddening thing is she was diagnosed with it and then it went into remission and now... she can't convince anyone that she has it. horrifying pain and no one is even looking into the disease. They are looking into Samataform disorder... basically psychological... She is currently in a mental ward and just getting worse. She was going to culinary school when she relapsed... your video made me think of her. I am so sorry... I feel powerless.
You are an awesome woman. I am praying and believing for your healing. God is a healer and lover of our souls. He hears all our prayers and I have faith that you will be a testimony how his miracle healing hands healed you. All my prayers.
I think I found a cure. I'm not making a dime of telling you the natural way I'm treating my CPRS/RSD and it seems healing it. w w w . isthisthecure4rsds. wordpress. com. Don't believe the doctors. Too many people think there's no cure. I am not in any pain because my symptoms are gone when I do this natural plan...find out more by reading my blog.
Praying for you, we know the battle. Until 8 months ago, my daughter was in a wheelchair. Pain specialist, gruesome physical therapy, and life is easier.
San Juan Pain Center Info: 1+(787) 754-9799 / 1+(206) 497-2349 - 117 Eleonor Rosevelt St., Hato Rey, San Juan, Puerto Rico, 00918 a new method from Dr. Osvaldo Font it cured my RSD
Hi, My name is Linda and I have had RSD/CRPS since I received an IM injection 6 months ago that hit my Sciatic Nerve and progressed rapidly. So far it has only affected my Right buttocks down. IT feels like the needle is still in my butt, plus about 20 more, a burning band of needled cinches around my thigh and down the back of my leg, my calf burns and a my flipper/foot is so tender. I love your video. Thanks for being so strong. I hate this so much. Can I add you as my friend?
Thank you Lorri for your msg, I was shocked to get it...As you know most people turn a blind eye & deaf ear. I do understand the lesions, the burning from inside out, for as long as it lasts. I know the scares the pain leaves, within and on the surface...I to hide, its just easier. It has been difficult as a single Mom, my daughter still stands on a fine borderline, my Mom has the EPP Porphryia to, hers is nothing like mine, I am severe. I totally know the ignorance of people
Your An Amazing Woman, I Do Know Pain Others Cannot See, & I Know What It's Like To Want To Hide Away...Thank you for sharing...just me (O:
(I've E.P.P. Porphyria, Diagnosed at 4 yrs of age, now 44 yrs old, life doesn't change, no matter how many good days, how strong we are on the outside...we hurt so much inside. Those who understand the pains, are those who suffer the same or similar.)
@moonbearwolf Hi: I am Samantha's Mom, I wanted to thank you for your very kind words to Sam, Your an amazing woman, you must be a gentleman to have such nice words and to see what Sam has gone through. Watching her grow up and having the opportunity to homeschool and see her achieve so much and thebn it all taken away after just foot surgery doesn't seem fair. Thank you for sharing what your are going through, sorry to hear of your pain too. Again thank you.
@moonbearwolf I want to thank you for sharing this vid. I also want to thank everyone else for their comments. This monster within , does never go very far away, always lurking in the background, or , right there in the forefront. Only we know what it's like, and most people who you explain it to as best as you can,just can't comprehend, we can't either sometimes
a difficult disorder to understand. most neurologist will dismiss this disease as a pseudoneuropathy of psychogenic orgin. too many studies with no clear evidence of medical understanding. same can be said of posttraumatic dystonia.
i have a quistion. RSD is that a form of CRPS? because for CRPS is a treatment that has been developt in Holland. they have been to macedonia. there is a woman how has almost 100% cure rate. they have been there with 6 patients. 5 of them dont longer have any pain from the CRPS. in Hollond the developt the PEPT methode. maybe this is something for you? it is in the beginning really painfull. but after a few minuts the pain has to decrease. some live in a wheelchairs en after words the can walk
I know exactly where you are coming from. It is a hellish disease with no set protocol within the medical industry. Therefore it is underdiagnosed and under treated. Very sad. I was diagnosed aug '08. What are you doing as far as treatment?
HUGGGGGS to you Dearheart...My boyfriend has this horrible disease. I hope one day you will feel better. Prayers and good vibes sent to you. I'm sorry that you have to suffer like this. Keep strong. Stay hopeful. God bless you.
i used to race atvs before and i dreamed of doing it all my life...and then i got in a bad accident and then later was diagnosed with this i have it in my whole left leg from toes to hip and in my back ribs and shoulders im maybe going to boston or seatle for treatment.....and i still plan on racing again even tho i know the risk but i love it and i cant live with out it
i did try some sort of water thing were i soak it in room temp for 2 min and warm for 4 an i couldnt stand it in room temp at all but i did it for like 2 or 3 weeks and it didnt work
@009sportsbabe009 it is not about soaking, it is about drinking water and eating sea salt to hydrate the body concurrently avoiding caffeine and alcohol which are diuretics.
@009sportsbabe009 , don't bother to go to Seattle, I have full body RSD with cardiac and GI involvement, Even the University of Washington won't even see me as they don't have a protocol for it. My neurologist got weirded out when I had blood pressure problems (WAY hi or low), and refused to consider that it was from the RSD. I ended up being hospitalized last year and she DROPPED me as a patient while I was in the hospital. Seattle just sucks for anyone for knowing more than "limb pain."
I have this too. I think mine was caused by stress though. Physical Therapy helps so much. If i had not started physical therapy I wouldnt be walking right now. I have it in both of my legs and in my hand. It sucks big timee :(
I have this disease too.your video made me cry.People ive known for years tell me its in my head.Theyre not there when I cant put on a shoe,or walk,or swim,or stand warm water.I pray for you and all of us.
it might be an horrible disease, but this song is even more terror inducing
quaxk 2 weeks ago
I too have suffered with RSD/CRPS1 for 7 yrs. Dr's had me on insane amounts of opiots and benzos along with countless spinal injections. My life crumbled. I was hopeless. In Nov., I found Dr Peter Pretzkop in CA at BFC Pain Track. When I arrived my right leg was blue, cold, useless and oh so painful. It is now pink, warm, works just like the other one and I am drug free! I found hope and want to share it! What a miracle it is to have my leg back and my life back. If you suffer, look him up.
ShotgunBarbie1 3 weeks ago
i have rsd. i hate sitting down and trying to sleep because my leg jerks alot, and when i walk, i hyper extend my knee backwards so i don't fall. it almost makes me cry because i can't control it and my leg always hurts and feels tired.
torylinnangel 3 weeks ago
This video really touched me. I have the same condition and have watched my life change drastically since it began when I was 13. My entire personality has changed. I feel like I'm not the person who I could have been, but I'm working on it. The pain can make me cynical, depressed, and even jealous of other people. I'm very thankful for the internet, where I connect to other people who suffer from debilitating diseases. I spend most of my days in bed, so this is my lifeline. GOOD LUCK.
lovedandlucy 1 month ago
But thankyou for sharing it makes me want to keep fighting harder and stronger!! I will keep you in my prayers!
ashleywrote 1 month ago
This movie was very touching, it also makes me scared. I was diagnosed with RSD/CRPS 5 years ago and amazingly the symptoms went away for two years! I was really blessed cause I was having a huge problem with pain! then it started back up this last year luckly Im still being as active as I can be staying in show choir! I also have a sister that has the same thing who has club foot and is in Stage 4 it is really hard to see get through the day the way she does... I just hope that I dont get there
ashleywrote 1 month ago
Dear Samantha, My English is not so good. But i hope you can understand me. 1997 i was diagnosed whit RSD and we called it in the Netherland CRPS type 1. It was comming after a stupid accidend on my work. Now we are 14 years, futher and i'm laying the whole day on bed. I know what you have been trough. And, it's horrible. The pain is some times killing you. but i see on the pictures a beatiful woman who see the light in here live also as i do. I wish you al the best i can. Whit love Alma&Storm
sterremaan80 2 months ago
i was diagnosed with crps about 2 years ago now. so i can understand her situation. anyone with this disease will understand that the pain is unbearable at times. try to strengthen your mind to cope with pain, rather than lashing out and punching everything in sight (like myself). keep pushing on hun!! i hate seeing this diagnosed on other people :((((((((((
tlothetrice 2 months ago
I was just diagnosed with crps just 3 months ago. Although I have only experienced the pain for a few months, I am sure all of us with crps would say ten minutes is too long. God bless you for making this video. Keep the faith and know God is there for all of us. When I am in the worst pain I ask God to put his arms around me and hold me. Merry Christmas to you and your family!!!!
kyd1970kyd 2 months ago
thank you for this now I know I am not alone its it brings tears to my eyes to know someone else has rsd /crps other then me. amy life has been turned upside down i am in pain all the time to the point where I cant walk i use a cane all the time I do i hide my pain just to get through get through day so I dont upset myfamily. I was a very active person before I got hurt. its been a year now and my doctors have given up on helping me with this stay strong !!!
wolfchick101 5 months ago
Thanks for sharing. I too suffer from RSD , dx'd July 2010. One of my biggest struggle is maintaining the once active life I used to lead. Stay strong. You are not alone. Theresa
snowleopardfriend 5 months ago
This video made me cry... :(
Gentle hugs from a RSD co-figher xx
Zivilein 6 months ago
I also have rsd. I was dx'd 7 years ago & I really struggle with missing the life that I used to have & the guilt I feel because I am missing out on so much of my children's lives. I will say a prayer for you.....you're not alone!
angelgr76 7 months ago
I also have RSD and am very aware of the total loss of you life you once had for me my biggist struggle is trying to still be a happy fun mommie to my 2 small children i was diagnosed with RSD summer of 09..your are so very very brave to share your experiances ...Gentle hugs
JoccyB87 7 months ago
So brave to share, The smiles and joy before the pain and suffering. I've had RSD since 07, My biggest struggle still is mourning the person I use to be. Gentle Hugs!
whirleygal 7 months ago
Thanks for posting this video and sharing.
kellkatz 10 months ago
i too have RSD. It controls all aspects of our life. It makes me feel less alone when I see or read about someone who has the same symptoms & whose limbs look the same as mine. Thanks for sharing your post.
kman5361 11 months ago
Canadian & American Medical Systems Need To Recognize, Research & Support Financially Uncommon Diseases as MUCH As Common !
moonbearwolf 11 months ago
I was diagnosed with this.. It has been exactly one year since I was diagnosed, today.
EricaThompsonMusic 11 months ago
I was diagnosed as a kid. when were you diagnosed?
chocolatecamera 1 year ago
Thank you for posting. I have RND too.
chocolatecamera 1 year ago
You are very appreciated for posting you experience strength and hope. My Heart Goes Out To You
hotlez008 1 year ago
My sister seems to suffer with this disease... The maddening thing is she was diagnosed with it and then it went into remission and now... she can't convince anyone that she has it. horrifying pain and no one is even looking into the disease. They are looking into Samataform disorder... basically psychological... She is currently in a mental ward and just getting worse. She was going to culinary school when she relapsed... your video made me think of her. I am so sorry... I feel powerless.
mystery104 1 year ago
You are an awesome woman. I am praying and believing for your healing. God is a healer and lover of our souls. He hears all our prayers and I have faith that you will be a testimony how his miracle healing hands healed you. All my prayers.
lajay2cute 1 year ago
This has been flagged as spam show
I think I found a cure. I'm not making a dime of telling you the natural way I'm treating my CPRS/RSD and it seems healing it. w w w . isthisthecure4rsds. wordpress. com. Don't believe the doctors. Too many people think there's no cure. I am not in any pain because my symptoms are gone when I do this natural plan...find out more by reading my blog.
isthisthecure4rsds 1 year ago
Many blessings to you and all of God's comfort.
Praying for you, we know the battle. Until 8 months ago, my daughter was in a wheelchair. Pain specialist, gruesome physical therapy, and life is easier.
Love from above and gentle hugs.
Robin
mamahenrobin 1 year ago
San Juan Pain Center Info: 1+(787) 754-9799 / 1+(206) 497-2349 - 117 Eleonor Rosevelt St., Hato Rey, San Juan, Puerto Rico, 00918 a new method from Dr. Osvaldo Font it cured my RSD
funface69 1 year ago
Hi, My name is Linda and I have had RSD/CRPS since I received an IM injection 6 months ago that hit my Sciatic Nerve and progressed rapidly. So far it has only affected my Right buttocks down. IT feels like the needle is still in my butt, plus about 20 more, a burning band of needled cinches around my thigh and down the back of my leg, my calf burns and a my flipper/foot is so tender. I love your video. Thanks for being so strong. I hate this so much. Can I add you as my friend?
lmkrava 1 year ago
My sister was just diagnosed with this disease....! i'm a paramedic and i know how bad it is!
just couple hours ago i have to cry! wish i could take my sister's place
and set her free from this disease...
Thanks for posting this video, for showing your courage and love for life!
God Bless you!
From now on i will day and nite pray for all people with this disease !
tavo75gdl 1 year ago
Hi Sam & Lorri; (O:
Thank you Lorri for your msg, I was shocked to get it...As you know most people turn a blind eye & deaf ear. I do understand the lesions, the burning from inside out, for as long as it lasts. I know the scares the pain leaves, within and on the surface...I to hide, its just easier. It has been difficult as a single Mom, my daughter still stands on a fine borderline, my Mom has the EPP Porphryia to, hers is nothing like mine, I am severe. I totally know the ignorance of people
moonbearwolf 1 year ago
Your An Amazing Woman, I Do Know Pain Others Cannot See, & I Know What It's Like To Want To Hide Away...Thank you for sharing...just me (O:
(I've E.P.P. Porphyria, Diagnosed at 4 yrs of age, now 44 yrs old, life doesn't change, no matter how many good days, how strong we are on the outside...we hurt so much inside. Those who understand the pains, are those who suffer the same or similar.)
moonbearwolf 1 year ago
@moonbearwolf Hi: I am Samantha's Mom, I wanted to thank you for your very kind words to Sam, Your an amazing woman, you must be a gentleman to have such nice words and to see what Sam has gone through. Watching her grow up and having the opportunity to homeschool and see her achieve so much and thebn it all taken away after just foot surgery doesn't seem fair. Thank you for sharing what your are going through, sorry to hear of your pain too. Again thank you.
Lorri
cordovaAK49 1 year ago
@moonbearwolf I want to thank you for sharing this vid. I also want to thank everyone else for their comments. This monster within , does never go very far away, always lurking in the background, or , right there in the forefront. Only we know what it's like, and most people who you explain it to as best as you can,just can't comprehend, we can't either sometimes
mascot426 11 months ago
I really don't and can't understand what you're going through, but I wish you all the best in the world and lots of hope. <3
redhairblacknails 1 year ago
a difficult disorder to understand. most neurologist will dismiss this disease as a pseudoneuropathy of psychogenic orgin. too many studies with no clear evidence of medical understanding. same can be said of posttraumatic dystonia.
eyedea81 1 year ago
i have a quistion. RSD is that a form of CRPS? because for CRPS is a treatment that has been developt in Holland. they have been to macedonia. there is a woman how has almost 100% cure rate. they have been there with 6 patients. 5 of them dont longer have any pain from the CRPS. in Hollond the developt the PEPT methode. maybe this is something for you? it is in the beginning really painfull. but after a few minuts the pain has to decrease. some live in a wheelchairs en after words the can walk
minddu 2 years ago
I know exactly where you are coming from. It is a hellish disease with no set protocol within the medical industry. Therefore it is underdiagnosed and under treated. Very sad. I was diagnosed aug '08. What are you doing as far as treatment?
mydogsioux 2 years ago
HUGGGGGS to you Dearheart...My boyfriend has this horrible disease. I hope one day you will feel better. Prayers and good vibes sent to you. I'm sorry that you have to suffer like this. Keep strong. Stay hopeful. God bless you.
mindya12 2 years ago
i used to race atvs before and i dreamed of doing it all my life...and then i got in a bad accident and then later was diagnosed with this i have it in my whole left leg from toes to hip and in my back ribs and shoulders im maybe going to boston or seatle for treatment.....and i still plan on racing again even tho i know the risk but i love it and i cant live with out it
009sportsbabe009 2 years ago
@009sportsbabe009 have u tried watercure2 . org ? treatment
maciejwrotek 2 years ago
i did try some sort of water thing were i soak it in room temp for 2 min and warm for 4 an i couldnt stand it in room temp at all but i did it for like 2 or 3 weeks and it didnt work
009sportsbabe009 2 years ago
@009sportsbabe009 it is not about soaking, it is about drinking water and eating sea salt to hydrate the body concurrently avoiding caffeine and alcohol which are diuretics.
maciejwrotek 2 years ago
@009sportsbabe009 , don't bother to go to Seattle, I have full body RSD with cardiac and GI involvement, Even the University of Washington won't even see me as they don't have a protocol for it. My neurologist got weirded out when I had blood pressure problems (WAY hi or low), and refused to consider that it was from the RSD. I ended up being hospitalized last year and she DROPPED me as a patient while I was in the hospital. Seattle just sucks for anyone for knowing more than "limb pain."
usecori 2 years ago
I have this too. I think mine was caused by stress though. Physical Therapy helps so much. If i had not started physical therapy I wouldnt be walking right now. I have it in both of my legs and in my hand. It sucks big timee :(
I feel yourr pain!
I hope your doing better (:
kamrynblanchard1 2 years ago
I have this disease too.your video made me cry.People ive known for years tell me its in my head.Theyre not there when I cant put on a shoe,or walk,or swim,or stand warm water.I pray for you and all of us.
forasec 2 years ago 2
God bless you, I'm very close to this Dx and ready for a change
FlyinHyy 2 years ago
Have you ever heard of "the water cure"
check out the videos under this heading there is and website but it wont let me post here
Investigate and be well angel
WarnerH20 2 years ago
I live with this disease to!!!
I don't think there are millions in USA that have it, maybe the world.
There is no awareness for this disease.
It is so hard living with this disease, and people just do not understand that i rarely leave apt.
I tell them, i can't, the pain is to bad, and they just don't understand.
They try to compare some pain they have, and i say, it is not the same.
Bless everyone's hearts who live with this awful painful disease.
kitcat1015 2 years ago