Hello friends, I was a teacher 12 years ago, an adjunct at a college and had hopes for getting my doctorate. The pain started in the back of my legs and feet...it spread to the point that I had to crawl on the floor when I got up, sit to go down the stairs. After all of this time, I started to feel better a few months ago and the anxiety and depression was leaving. Then, suddenly, I started having this creepy crawly feeling under my skin...and it is driving me nuts!!! Will this ever end???
i cried also....i have stage 4 and live in hell also, 4 years now, i have the neurostimulator implant, nerve blocks monthly, nothing works, tired of pills and pain, my kids are 20,28, and 31...not 1 of them understands or helps me...i am 49,and hate waking up anymore!
@kepleygal I'm so sorry to hear about your battle with RSD :( It's a truly awful condition and one of the worst parts of it is not having other people understand the pain we go through every minute of every day. If you want to talk, just PM me - I, too, am tired of the pills and here in NZ they don't offer the NCS, although I have looked in to getting it done overseas. Pain has taken away the joy in my life, but I keep fighting every day so as not to let the disease win xx soft hugs xx
@iceteabeingstirred thanks for replying....it means a lot to me! I remember being the optimistic one thinking i could fight this, but it's like the Devil took over my body, but God has my heart, having a real bad night tonight, it's attacking my organs,and back really bad,i am going to put a Fentenal patch on, but it is like anything else, i will not sleep~I miss sleeping, i sweat all night with the pain! my heart goes out to you~thanks for listening xoxo Lori soft hugs back
@kepleygal I miss sleeping too! It's like my body's forgotten what it's like to actually sleep and relax! I get an hour a night in total if I'm lucky. You are most welcome in regards to me replying and listening. This battle is too hard to fight alone. We have to stick together and look after each other. I stopped being optimistic a few years back - I've had this now for 7 years and I'm slowly accepting the fact I'll always be sick, but it's not easy to accept.
i had rsd for three yeers b4 it got diagnosed i was told by doctors that i was faking and teachers told me off for trying to get attention, even though my face was pale, the area around my eyes were yellow and my legs wer purple. eventually i was sent to great ormand street where i was dianosed with rsd. This video made me cry so much i can really relate. people with rsd dont forget that your not the only one and there is hope :)
This video is great! I made me cry because it really says what I'm feeling. I'm suffering from RSD/CRPS since march 2010. The problem is that I met so many ignorant drs. and so it's getting worse and worse and no one really cares! I shared this video on my blog (tine550.blogspot.com - in German) tonight because I wanted my friends and familiy to watch this. I really hope we all will find cure someday! So let's keep on fighting! xx
@Zivilein The song is called "It's Not Over" by Secondhand Serenade. I'm so sorry that you too are suffering from this awful condition. I've had it 7 years and the pain is so exhausting. It would be great to chat sometime! And thank you for sharing it on your blog!
Imagine waking up in the hospital and telling everyone "Something is very wrong, it feels like a metal sock lined with nails is clamped on my leg" They all ignored me. Imagine your legs feeling like someone took a GIANT syringe filled with HOT thick gel filled with shards of glass. Imagine someone pouring kerosine in your veins and lighting it on fire. The fire never goes out. Imagine touching your skin with a feather, it feels like crunchy burn victims skin.
i have RND and this video made me cry. me and a friend of mine are trying to start a walk for RND just like hows theres walks for cancer and diabetes and what not, to raise money for research. im recently being treated at the childrens instute at pittsburgh one of the few RND spezlized hospitals in the world, but thank god there is one.
People can really get more of a handle of how you're feeling after watching videos like these. Thank you. This has helped my community understand my RSD!
People can really get more of a handle of how you're feeling after watching videos like these. Thank you. This has helped my community understand my RSD!
Thank you for this video. I am starting a video blog so that my friends and family can understand my pain and it is great to have these videos to reference to. My mother was diagnosed with RSD when I was 11 years old, and I never understood her pain. That is, until my accident in 2010. I know suffer from the disease too. It is rough, but the support groups I have found have brought me a new sense of hope. Stay positive my fellow sufferers. We will make it through this to see brighter days. <3
So, my thoughts are to not engage Cheryl into a conversation regarding the RSD, allow her to bring it up if she feels like it. She may decide to address the family as a whole. I see emotional support as a necessity but done very very Strategically, on her terms & Conditions, when she is ready to receive it. Rather as to when our emotional greed wants to give it. As sometimes the Victim's Family/ Friends meaning well can do the opposite Any advise from you please simply respond/Thanx
So, Cheryl is being treated at The University of Michigan's Hospital in Ann Arbor , Mich. I had my cancer surgery there and it is a top notch Hospital. But all of this is irrelevant, as my question to you..the victims of this Horrible Disease is how should we interact with Cheryl as on the 16th we will be seeing her for the first time since she was diagnosed. My Marine Corps instinct becomes confused. you can kill an enemy easily but how do you kill something that is in fact part of you.
My Name is not important,however as an X Marine that has seen/dealt with destruction on colossal scales from Beirut to Our Gov't's Black Ops you never hear of. These RSD Video's almost, well, okay, I cried. It happened about 3 years ago, my very much loved Sister in law broke her foot.
Then she started withdrawing from the family saying."I have something but don't want to talk about it ????" I now understand the why. As a strategist/tactician I have no solution and my wife's in tears
Thank you for this great video. This is exactly how I feel. Every day and every night thereis the pain. I can't stand it no more. My only hope is to die soon.......this is hell.
I wish all the best for you. Greetings from Italy.
I have been living with this for ten years and been to dozens of ignorant drs. I am in stage 4. I'm trying to get an appointment with Calamer Pain Treatment center in Rhode Island for a new type of treatment.
I can't live like this much longer but I do. I lost everyone in my life due to this and live alone now for 3 years. It is the most horrible thing that could afflict anyone because no one believes it and they all want to touch you when you try to explain. Your video says it all, Thank you.
@shanpalm61 Thank you Shannon. I'm really glad that this video could help explain what it's like to live with CRPS. It's such a difficult thing to put into words and try and explain to people who don't have it, so I'm really glad that this video could help :) xx Ailsa
If anyone watching this knows someone with this disease, DO NOT SHOW US PITY..... help us escape from our realities, through laughter, jokes, humour, kindness, practical tangible HELP, listen to us, but do not presume to tell us, YOU know what WE are going through. Because fortunately , you don't.
You can see the effects, sure? But anything else. No way, NO how.
There needs to be more videos and awareness about this most harrowing, cruel, rapist of a disease. This disease, has cost me my goddamn life, or more ways than ANYONE without it, could fathom.
I have turned into (almost) a human with qualities I despise in the human race. I have bitterness, jealousy, rage, despair, hate (yes, hate), anger, so much anger.
I am SICK TO FUCKING DEATH of condescending Doctors, nurses, specialists, random people off of the street, thinking they know it all.
@angelrainbird Hey thank you so much for watching and I hope it helped you feel less isolated, even for a short time. RSD has taken so much away from me, and I find it hard to simply open my eyes each morning. I get the "you're lazy" thing too. If only people could understand how much effort it takes for us to wake up and attempt to face the day. That is not laziness! I pray that you have a manageable afternoon and please message me any time to talk! xx love Ailsa xx
Video is great - perfect song to accompany. The most difficult for me is not the pain (excruciating!!!), it's doctors, friends, and family who turn a deaf ear and blind eye to understanding RSD/CRPS and resultant "mental" changes. I've never felt so degraded, misunderstood, isolated, or "shunned". I survive ONLY because I rely on the Lord. He's my best friend, counselor, and life-sustainer. Please know I UNDERSTAND you and your pain! You're not alone and I pray God's healing over all of you.
@PrazB2JC I know exactly what you mean. If it weren't for my faith, I don't know where I'd be! And I totally agree - since getting CRPS people have acted like it's all in my head and that it's not actually real. Add that on top of the pain and isolation and the feeling like we're never going to get out of this in one piece, and it makes CRPS a living hell. I pray that you're having a good day and that your pain is manageable xx
You put the exact words in my mouth! So sorry you have to go through this every day...I have CRPS too. thank you for spreading the word because many people dont understand what we all go through. YOUR GREAT:) THANK YOU!
I was looking up something about RSD and stumbled across this video - outstanding. You speak for all of us who suffer and can only dream about what our lives "used" to be like.
Praying for a cure of all of us who suffer. What a roller coaster of life we live on!
I was looking up something about RSD and stumbled across this video - outstanding. You speak for all of us who suffer and can only dream about what our lives "used" to be like.
Diagnosed in '94. Surged into stage III @ 6 months ago. In a couple RSD groups here on FB too? You a member of any? Thanks for taking time to post your vid to spread the knoweledge too.
I just watched this after one of the worst nights of pain I've ever had. I've had painful nights before but every part of me was bad last night. I wish I could have explained it so well. This explains so much and we need to get as many people to watch it as possible. Well done.
If you really want the truth then don't look to Western doctors....
Yes, the pain is really bad. I have this pain too, but I think I've found a cure. Check out my blog for more information on how nutritional supplements and glandular support that is in the form of protein, rather than steroids or other drugs, may be more than just taking away all my pain. It actually seems to be curing me! Find out more on my blog at w o r d p r e s s . c o m. I'm not selling anything. isthisthecure4rsds.
This made me cry in the first 20 seconds of it! You did a great job with the video ailsa. I understand your CRPS because I have Aspergers and I know how it feels to feel like nobody REALLY understands. (except you :) )
Hello friends, I was a teacher 12 years ago, an adjunct at a college and had hopes for getting my doctorate. The pain started in the back of my legs and feet...it spread to the point that I had to crawl on the floor when I got up, sit to go down the stairs. After all of this time, I started to feel better a few months ago and the anxiety and depression was leaving. Then, suddenly, I started having this creepy crawly feeling under my skin...and it is driving me nuts!!! Will this ever end???
lightening16 1 month ago
i cried also....i have stage 4 and live in hell also, 4 years now, i have the neurostimulator implant, nerve blocks monthly, nothing works, tired of pills and pain, my kids are 20,28, and 31...not 1 of them understands or helps me...i am 49,and hate waking up anymore!
kepleygal 2 months ago
@kepleygal I'm so sorry to hear about your battle with RSD :( It's a truly awful condition and one of the worst parts of it is not having other people understand the pain we go through every minute of every day. If you want to talk, just PM me - I, too, am tired of the pills and here in NZ they don't offer the NCS, although I have looked in to getting it done overseas. Pain has taken away the joy in my life, but I keep fighting every day so as not to let the disease win xx soft hugs xx
iceteabeingstirred 2 months ago
@iceteabeingstirred thanks for replying....it means a lot to me! I remember being the optimistic one thinking i could fight this, but it's like the Devil took over my body, but God has my heart, having a real bad night tonight, it's attacking my organs,and back really bad,i am going to put a Fentenal patch on, but it is like anything else, i will not sleep~I miss sleeping, i sweat all night with the pain! my heart goes out to you~thanks for listening xoxo Lori soft hugs back
kepleygal 2 months ago
@kepleygal I miss sleeping too! It's like my body's forgotten what it's like to actually sleep and relax! I get an hour a night in total if I'm lucky. You are most welcome in regards to me replying and listening. This battle is too hard to fight alone. We have to stick together and look after each other. I stopped being optimistic a few years back - I've had this now for 7 years and I'm slowly accepting the fact I'll always be sick, but it's not easy to accept.
iceteabeingstirred 2 months ago
thanks for posting this video for us RSDers.
I've had RSD for 15 years.
For those who suffer this disease go to American RSDHope for more info on RSD/CRPS,
There you can also find info on support groups.
Support is very important when you have RSD/CRPS.
cocoabellarsd 2 months ago
i had rsd for three yeers b4 it got diagnosed i was told by doctors that i was faking and teachers told me off for trying to get attention, even though my face was pale, the area around my eyes were yellow and my legs wer purple. eventually i was sent to great ormand street where i was dianosed with rsd. This video made me cry so much i can really relate. people with rsd dont forget that your not the only one and there is hope :)
CODscaterGirl 2 months ago
This video is great! I made me cry because it really says what I'm feeling. I'm suffering from RSD/CRPS since march 2010. The problem is that I met so many ignorant drs. and so it's getting worse and worse and no one really cares! I shared this video on my blog (tine550.blogspot.com - in German) tonight because I wanted my friends and familiy to watch this. I really hope we all will find cure someday! So let's keep on fighting! xx
PS: Which artist sung this beautiful song?
Zivilein 2 months ago
@Zivilein The song is called "It's Not Over" by Secondhand Serenade. I'm so sorry that you too are suffering from this awful condition. I've had it 7 years and the pain is so exhausting. It would be great to chat sometime! And thank you for sharing it on your blog!
iceteabeingstirred 2 months ago
@Zivilein good job! now we all know we are in this together hugs xoxo
kepleygal 2 months ago
Imagine waking up in the hospital and telling everyone "Something is very wrong, it feels like a metal sock lined with nails is clamped on my leg" They all ignored me. Imagine your legs feeling like someone took a GIANT syringe filled with HOT thick gel filled with shards of glass. Imagine someone pouring kerosine in your veins and lighting it on fire. The fire never goes out. Imagine touching your skin with a feather, it feels like crunchy burn victims skin.
shelbie4u 3 months ago
i have RND and this video made me cry. me and a friend of mine are trying to start a walk for RND just like hows theres walks for cancer and diabetes and what not, to raise money for research. im recently being treated at the childrens instute at pittsburgh one of the few RND spezlized hospitals in the world, but thank god there is one.
BubblesArePrettyful 4 months ago
This has been flagged as spam show
People can really get more of a handle of how you're feeling after watching videos like these. Thank you. This has helped my community understand my RSD!
UofMFootball163 4 months ago
People can really get more of a handle of how you're feeling after watching videos like these. Thank you. This has helped my community understand my RSD!
UofMFootball163 4 months ago
Thank you for this video. I am starting a video blog so that my friends and family can understand my pain and it is great to have these videos to reference to. My mother was diagnosed with RSD when I was 11 years old, and I never understood her pain. That is, until my accident in 2010. I know suffer from the disease too. It is rough, but the support groups I have found have brought me a new sense of hope. Stay positive my fellow sufferers. We will make it through this to see brighter days. <3
HopeForRSDHelp 5 months ago
Part 3.
So, my thoughts are to not engage Cheryl into a conversation regarding the RSD, allow her to bring it up if she feels like it. She may decide to address the family as a whole. I see emotional support as a necessity but done very very Strategically, on her terms & Conditions, when she is ready to receive it. Rather as to when our emotional greed wants to give it. As sometimes the Victim's Family/ Friends meaning well can do the opposite Any advise from you please simply respond/Thanx
nate7525 5 months ago
Part 2
So, Cheryl is being treated at The University of Michigan's Hospital in Ann Arbor , Mich. I had my cancer surgery there and it is a top notch Hospital. But all of this is irrelevant, as my question to you..the victims of this Horrible Disease is how should we interact with Cheryl as on the 16th we will be seeing her for the first time since she was diagnosed. My Marine Corps instinct becomes confused. you can kill an enemy easily but how do you kill something that is in fact part of you.
nate7525 5 months ago
Part 1.
My Name is not important,however as an X Marine that has seen/dealt with destruction on colossal scales from Beirut to Our Gov't's Black Ops you never hear of. These RSD Video's almost, well, okay, I cried. It happened about 3 years ago, my very much loved Sister in law broke her foot.
Then she started withdrawing from the family saying."I have something but don't want to talk about it ????" I now understand the why. As a strategist/tactician I have no solution and my wife's in tears
nate7525 5 months ago
Thank you for this great video. This is exactly how I feel. Every day and every night thereis the pain. I can't stand it no more. My only hope is to die soon.......this is hell.
I wish all the best for you. Greetings from Italy.
69lucyfer 5 months ago
I have been living with this for ten years and been to dozens of ignorant drs. I am in stage 4. I'm trying to get an appointment with Calamer Pain Treatment center in Rhode Island for a new type of treatment.
I can't live like this much longer but I do. I lost everyone in my life due to this and live alone now for 3 years. It is the most horrible thing that could afflict anyone because no one believes it and they all want to touch you when you try to explain. Your video says it all, Thank you.
shanpalm61 6 months ago
Beautiful video hun. I can't even begin to imagine what you go through each day. You are so strong. Love you!
xamieliax 6 months ago
Thank you for this video. I couldn't explain my pain but now I can.
Shannon Thompson
shanpalm61 6 months ago
@shanpalm61 Thank you Shannon. I'm really glad that this video could help explain what it's like to live with CRPS. It's such a difficult thing to put into words and try and explain to people who don't have it, so I'm really glad that this video could help :) xx Ailsa
iceteabeingstirred 6 months ago
If anyone watching this knows someone with this disease, DO NOT SHOW US PITY..... help us escape from our realities, through laughter, jokes, humour, kindness, practical tangible HELP, listen to us, but do not presume to tell us, YOU know what WE are going through. Because fortunately , you don't.
You can see the effects, sure? But anything else. No way, NO how.
arihuss 7 months ago
There needs to be more videos and awareness about this most harrowing, cruel, rapist of a disease. This disease, has cost me my goddamn life, or more ways than ANYONE without it, could fathom.
I have turned into (almost) a human with qualities I despise in the human race. I have bitterness, jealousy, rage, despair, hate (yes, hate), anger, so much anger.
I am SICK TO FUCKING DEATH of condescending Doctors, nurses, specialists, random people off of the street, thinking they know it all.
arihuss 7 months ago
@angelrainbird Hey thank you so much for watching and I hope it helped you feel less isolated, even for a short time. RSD has taken so much away from me, and I find it hard to simply open my eyes each morning. I get the "you're lazy" thing too. If only people could understand how much effort it takes for us to wake up and attempt to face the day. That is not laziness! I pray that you have a manageable afternoon and please message me any time to talk! xx love Ailsa xx
iceteabeingstirred 7 months ago
Video is great - perfect song to accompany. The most difficult for me is not the pain (excruciating!!!), it's doctors, friends, and family who turn a deaf ear and blind eye to understanding RSD/CRPS and resultant "mental" changes. I've never felt so degraded, misunderstood, isolated, or "shunned". I survive ONLY because I rely on the Lord. He's my best friend, counselor, and life-sustainer. Please know I UNDERSTAND you and your pain! You're not alone and I pray God's healing over all of you.
PrazB2JC 8 months ago
@PrazB2JC I know exactly what you mean. If it weren't for my faith, I don't know where I'd be! And I totally agree - since getting CRPS people have acted like it's all in my head and that it's not actually real. Add that on top of the pain and isolation and the feeling like we're never going to get out of this in one piece, and it makes CRPS a living hell. I pray that you're having a good day and that your pain is manageable xx
iceteabeingstirred 8 months ago
You put the exact words in my mouth! So sorry you have to go through this every day...I have CRPS too. thank you for spreading the word because many people dont understand what we all go through. YOUR GREAT:) THANK YOU!
ar19335 10 months ago
thank you for this video. you explained it perfectly.
abbeyandhaleykay 1 year ago
Brilliant one of the best RSD videos have ever seen....having it since 1999 one day freedom will be ours....
beefree1 1 year ago
I was looking up something about RSD and stumbled across this video - outstanding. You speak for all of us who suffer and can only dream about what our lives "used" to be like.
Praying for a cure of all of us who suffer. What a roller coaster of life we live on!
ChristyMcWynn 1 year ago
I was looking up something about RSD and stumbled across this video - outstanding. You speak for all of us who suffer and can only dream about what our lives "used" to be like.
Praying for a cure of all of us who suffer.
ChristyMcWynn 1 year ago
Diagnosed in '94. Surged into stage III @ 6 months ago. In a couple RSD groups here on FB too? You a member of any? Thanks for taking time to post your vid to spread the knoweledge too.
CH
Crazyhorse479 1 year ago
I just watched this after one of the worst nights of pain I've ever had. I've had painful nights before but every part of me was bad last night. I wish I could have explained it so well. This explains so much and we need to get as many people to watch it as possible. Well done.
Beachbabyau 1 year ago
If you really want the truth then don't look to Western doctors....
Yes, the pain is really bad. I have this pain too, but I think I've found a cure. Check out my blog for more information on how nutritional supplements and glandular support that is in the form of protein, rather than steroids or other drugs, may be more than just taking away all my pain. It actually seems to be curing me! Find out more on my blog at w o r d p r e s s . c o m. I'm not selling anything. isthisthecure4rsds.
isthisthecure4rsds 1 year ago
This video is spot on. I suffer from RSD and its true it changes your body, mind and life style so quickly... well done
MrEvansboys77 1 year ago
Wow, that completely captures the pain for people...great job!
butterflykisses0094 1 year ago
This made me cry in the first 20 seconds of it! You did a great job with the video ailsa. I understand your CRPS because I have Aspergers and I know how it feels to feel like nobody REALLY understands. (except you :) )
hhcoolmv1 1 year ago
@hhcoolmv1 Thank you so much, Hiria. I'm lucky to have you as a friend :)
iceteabeingstirred 1 year ago
I've got so much respect for you, love.
Also I miss you :)
This video is really good and I am so proud of you.
NewYorkSubway 1 year ago 2
@NewYorkSubway I miss you too! And thank you <3
iceteabeingstirred 1 year ago
This is amazing. You are such an amazing person.
GeorgiaAGS 1 year ago 2
@GeorgiaAGS Thank you Georgia! You are just as amazing!
iceteabeingstirred 1 year ago