my friend was just diagnosed with this. she is only in seventh grade and is complete pain. i havent seen her in a long time and i miss her... im kinda scared too. this has helped me understand better about whats going on. thank you for making this it made me cry but thank you<3
I am complex regional pain syndrome and I can attest to the horrible, burning, never-ending pain. I am on Fentanyl patches, Percocet, and Lyrica for the pain; all of this hardly works. I also have to take medication to sleep, but it barely works. Medical Science does not seem to have answers; it may never have the answers to this disorder.
What makes this worse is that those around each of us do not understand the pain we are in. My girlfriend always expects me to do stuff I cannot.
Thank you for putting this video out there not enough people know what people suffer through. My mom has had RSD for 9 years. I see it becoming worse everyday. Its at the I don't look sick disease stage and most doctors have no clue what it is. I have made a documentary titled Pain on my channel please check it out. I'm helping to put out the fire.
I have this in my right arm / shoulder. I have been in hospital for 6 months and in intense physio therapy! i never was able to explain how much it hurt and everyone wonders why i am never at school etc. i was 14 when i was diagnosed, and i am now 15. the only way i can explain it is that my life is a little bit of hell :( lets hope we all heal!
I've just been diagnosed with CRPS. I've never heard about it until my doctor told me I had it and I did some research on the internet. I pray for myself and others that we don't have to suffer anymore. I pray that medications will help and I can go on with my life. I'm 47 years old and don't want to end up in a wheelchair. I still have the mentality of a teenager to walk an amusement park and go on a rollercoaster. Dear GOD, please help us ALL. Amen.
Aw The Similarities Are So Alike! Go to google and type in "mett the gardasil girls, kahlia from new zealand" its my story. mmine is believed to be set off by a vaccine as scarey as it is, this is my story before they diagnosed me! If you want to read my other article i got published email and let me know its all about my journey!
A Question For Other Sufferers. Has This Set Off Any Other Disorders?? I Know Also Suffer IBS, Irritable Bowel Syndrome and Cant Eat Quite A Few Things! Its Hard
@92knicole I have not had the connection confirmed, but IBS is caused by sympathetic nervous system dysfunction, like CRPS can be.... I have had IBS and bladder probs.
@92knicole I have CRPS and also have IBS, like you. I also have "irritable bladder,: whereby I must make frequent trips to the bathroom. I have Fibromyalia, TMJ, frozen shoulder or "impingement syndrome," whichever one prefers. I have Narcolesy, which, like CRPS is an auto-immune syndrome. Yeah, my life's a real day at the beach.
i was diagnosed 16 years ago and was just told yesterday that i was in stage five i just posted a video that was take on me i was the first person in the world to receive these new braces
I know how my son felt after seeing this video. Thankfully, the Lord has answered our prayers by setting him free from pain from a new medical treatment called the Calmare Pain Relief treatment that teaches the nerves to send a no-pain message instead of the pain message they've gotten stuck on. He's been pain-free and off meds since last June 2010, praise God! And so have four other people we've personally told about. Please Google Dr. D'Amato and Calmare Pain Relief. God bless
I Have This And I Cried When I Saw This! I Never Knew The Right Words To Describe Everything And When I Was Diagnosed With This Many Of My Friends Abandoned Me Because I Am A "Freak" (Im Only 18) But Since I Posted This Link On My Facebook With The Comment "I couldnt have described my pain any better if i had written it myself" ! This Is Amazing As Much As It Is Sad! I Watch This Regularly Now As Support! Thank You! and God Bless You. I Feel If we Keep Praying We Will Be Healed One Day
@92knicole keep praying, I have been given some relief and I owe it to the Lord and the people praying for me!! Never lose faith, in His time he will reveal His plan for you. Jeremiah 29.11 is a great verse!
I have CRPS/RSD since 4 year, I'm in a wheelchair permanently. It sucks. But I focus me on the good things in live, and thank God when I've a moment with lesser pain.
My muscles are also very weak, and got weaker and weaker, and my bones aren't strong too.
I'm glad that this vid gives a little more awerness on CRPS. Lots people don't know about it. Even a lot of nurses I got home, I have to explain what it is.
i know what the pain is like i am 14 with RSD. i have been on so much meds and gained so much weight, it is scary. i hate to say this but i am glad i found this video it reminds me im not alone there are others who now this pain its not just me, im not crazy. for me sleep is releif were i can dream about what can be but why is releif so hard to find? i ask myself that question everyday....
Hi, I was diagnosed with CRPS a little less than a year ago. I have tried 2 sympathetic blocks and am getting ready for number 3. The first one gave me almost 3 weeks of 0 pain. It was blissful. The second one did nothing, if anything I think it's getting worse. I am 43 years old and feel like the life I fought to make for myself was a waste. In 2003 I had a gastric bypass, and as a result lost 230 lbs. however, since my diagnosis I have put on 45 lbs. I feel hopeless.
I wrote this when I was in a flare up in the early hours of the morning, and it was a great experience to get it off my chest!! So a BIG thank you! It helped me to be able to express it all too! :)
I have cerebral palsy. In 1983, during one of my operations, something went badly wrong. I woke up from surgery on both legs screaming in agony. They had to take my cast off because wearing it was agony. Over time, I learned Ihat putting on shoes and socks, cutting toenails, rubbing my feet with a washcloth and running water causes agony. I watched my toenails become ridged and cracked. My toes curled up under my feet. I must constantly wear protection for my legs and feet to avoid
brushing up against something. I got this way thanks to the best doctors in the world. My parents were angry at me for my worsened condition and when I did not embrace the recommended therapy of rubbing my affected lower legs and feet with a towel. (My relationship with my parents was abysmal to begin with.) For 28 years, there has been no diagnosis or treatment. For most of that time, I have been too ashamed of what happened to even mention the city where the operation took place or even the
surgery itself. A second botched operation at age 21 caused such anger in my parents and emotional abuse that I left home and moved 500 miles away rather than take the fall for a botched surgery I never wanted. That second mistake would eventually require regular doses of morphine and kill my will to live. For 28 years, no doctor could even put a name to the chaos at age 12 that ruined my life. To this day, I need a nurse to even cli[p my toenails and showers and getting dressed are tortures.
I feel blame and shame. No one ever told me what went wrong. No apology or support groups. Thanks to a video on Youtube, I now have a name for 50% of my chronic pain hell. I hope the doctor who did this to me will rot in hell. No lawsuit can possibly restore my destroyed life and at any rate, the hospital's lawyers would put me obn trial if I did sue. CRPS ended my childhood and ruined my life. Thank you very much. 28 years to find the truth....but my life will go on as before.
I'm a nurse practitioner and just found out aboutCRPS/RSD a couple of weeks ago. Yep, a patient presented with all the symptoms but I was lost. Thankfully I work with a physician who knew all about it, so the patient got off to a fast start with an early diagnosis and treatment. Thank you, Melgus99 for an excellent presentation. veryWest
i am 36 i have been in excruciating pain, I have tried physical therapy lots of different narcotic pain drugs, to no avail. My prayers were answered and got an appt with a new pain doctor who is one of the leading doctors in CRPS in the country. I pray for all those suffering from this dabilitating disease. I pray for days with tolerable pain. Thats all I can ask for myself and others with CRPS.
I was injured at work in October 2004, it wasn't till May 2006 that I learned my pain is caused by RSD... six years now since the injury... hoping for the neurostimulator implant... but been waiting 2 years out of the six years for this surgery to be done... RSD is a nightmare that you just can't wake up from.... the pain never ends
I just found out my friend has cprs she has been in and out of hospital for months waiting for the docs to figure out wats wrong, they have just sent her home with pain meds coz they can't do anything about it... She has it in her right arm because a nurse hit a nerve wen implanting the implanon or Birth control, then wen the docs were trying to fix that they hit a nerve in her foot and now its there too... I don't know what to do to comfort her or make her feel better...
I am 22 yrs old and I have been diag. with RSD. I will be having a neurostimulator implant put in , in Dec. RSD is very painful and has caused a lot of depression for me.. I had the SCS trial it was AMAZING! It is something anyone with this horrible condition to try..I have tried strong pain meds, spinal cord blocks, phys therapy and 3 surgeries to no avail..I pray God's help to everyone who suffers with this! There is hope though!!
I have CRPS, and have seen countless specialists. Its a very little understood disease. I spent a couple of years taking 380 plus of Oxycontin daily, and honestly thought it relieved the pain. I'm told there was little relief, just more than 24 months of little to no recollection. A functioning idiot, that made stupid and poor decisions until it was realized that I had no idea...period. Now, I know I have continuos pain, but at least I know what I'm doing. There are no more tears.
I've been told I have RND or RSD. I have no swelling or physical changes but I feel the pain. I've had this for 5 years and have been in and out of wheel chairs and hospitals. I'm 16 now and this has robbed me of my life. I know what it feels like to be rejected by family, friends, classmates, and teachers. After fighting this for so long I've started to become paralyzed. I wish there was something that I could do, or something that can help. We've exhausted almost every option.
@bluetear222 Damn! This is a tough one. It will be 5 years for me on the 14th of next month. Now it has moved into my chest, and resembles a heart attack. I am much older than you, and had my retirement arranged for before this happened. My fondest wish is there could be a cure found, or if not that, to have everyone understand what we are going through. Its hard. To suddenly lose the ability to do things you once did without thinking makes it very difficult to continue. Please stay strong.
This is defiently something I recognise...if i was diagnosed earlier I would of not have suffered for a lifetime..instead while i was experincing it in the beginning i was sent to a psycritics by a neurosurgent and the psycritics said it's not in your head...fire this doctor...so we did...later ...much later...i was diagnosed RSD
Wow! What an accurate, informative video that is! I, too, have RSDS and know what you're going through is real. Thanks for raising public awareness. God bless you!
My 12 yr. old daughter, battled with RSD for a year, although recently in a relapse, the last 4 months were spent in remission, no more Lyrica, and free, painless movement. It is painful, and rigorous therapy, but there is hope. Bless and keep all those suffering from RSD. Mary's favorite verse. I can do ALL things through Christ who strengthens me.
Thank you for sharing. I'm a qualified nurse and knew that an ok x-ray and ultrasound was half the answer. I was diagnosed this week by a shoulder specialist after 6 months of agonising physio, being called a malingerer and having my pain disbelieved. I'm going to a pain management specialist and will start physiotherapy again with the new diagnosis of CRPS Good luck to all who are going through this debilitating condition. Be kind to yourself and ask for help. Don't give in or give up.
@Lucrecia136 Exactly why we need awareness! Hope your treatment is helping with both function and pain! My wait for a diagnosis was too long over a year! I am doing well now anyways, but it got really bad before it improved! and 6 years of it really bad!!
OMG i've just been diagnosed with this in my right arm , after an injury at work ,,,,,, thought ya--- a while to rest, heal and ill be back at work ,,,,, now after this video ill be asking my dr for more detailed prognosis ,,,, i'm a physical therapist myself , this explains why my own therapy and the pain killers haven't worked , thanks for the posting ,,, as scared as i now feel , its good to know the full details.
hello again all you wonderful people with crps out there its aces here again just to say im having a day that hurts so just to say sara thanks again for this song it keeps me going plan b this week injection in my neck to hopefully ease some of this horibble pain look up take care crps people im not going to stop i will let you know how the neck injection went god bless
@acesiiii Is it the "ganglion block" injections you are going for? I had them 3 times, and nothing. I'll be praying they work for you. How long have you been diagnosed with this? Be 5 years for me on the 14th of November, but feels like 2 lifetimes.
hello, im 14 and just ot diagnosed with this today, after arguing with drs for 2 and a half years. this video has proved to me that im not alone with this, that there are other people in the same situation, thank you for this excellent video, it will help me with info for my school medical room and other teachers to make them aware of this very much unknown condition, thank you again : )
hey there you amazing people with crps again its aces here things are getting a little better with more gabamptom to a point 2100 mgs keep trying ill stop there plan b neck injections left side neck after neck fusion im scared but take care thanks sara again yur song insipres me so much god bless
Thank you for shering this Both myself and 16 yr old have RSD mine is better most of the time hers is not after 2 yrs. We have found help at the Cleveland Clinic where there was no help or hope before for everyone out there that suffers stay strong and don't give up EVER xoxox KIT and Em
I have just found out that I have RSD. I had never heard of it before! I was shocked to hear I had this RSD and that it is so horrid and still you never hear of it!
Thank you for putting this information out there so the average person can get an idea of what it is to have this burning and I would say stinging pain at times. We must get the word out there and we must stay strong in the face of ignorance!!
electroneuromedular therapy has cured or put in remission crps there is a DR. in puerto rico named osvaldo font that is a neurophisyologist that invented a method called eletro neuro medular therapy he has raised people from wheel chairs and cured migraine and treats rsd
@funface69 thank you for sharing, however we should be aware that all treatments come with risks and not all treatments work for everybody. Each patients CRPS/RSD can be so different and also in its response to different treatments.
wow! amazing video! im 24, and about 6 months ago i herniated a few disc's in my back and its causing my leg to feel like theres a blowtorch on it at all time unless im on my meds. my back does hurt where the injury is, but no where near what my leg feels like...ive NEVER heard of this until i stumbled on a girls videos just now and continued looking at others..im not big into religion but if there is a higher power out there, may it bless you all!
I was diagnosed with RSD 5 years ago. It is now moving from my right hand into my neck. The dr just made me get a Nerve Conduction Study, and now I feel like the day I was diagnosed all over again......my thoughts and prayers are with all who suffer from this horrible condition!!!
well good morning 6 am sat just checking in with all you amazing people with crps out there thats what it is day by day its ok too fell like you feel its what it is unfortunatly hang in there you will get by i myself fell like i will suceed in an answer im not going to quit i seen another surgen thurs and will continue too life feels so empty sometimes but its not we have sara song i feel like this song gives me that strength and my grandkids and my kids its so terrible they see this aces@shaw
hey you crps amazing people ive been digionesed with this powerfull thing..i had fusion neck 2 years ago this is the result im still wondering how i can fix this well the loved ones around you will help thanks sara i listen too thos often 4 5 timess a day it gives me strengh the angels thanks take care we will get through this aces@shaw,ca/billy
I have had CRPS since I was 10. It took them 2 years to diagnose. I am not almost 17. Last year, I went to Children's Hospital of Philladelphia. To the RND prorgram (Reflex Neurovascular dystrophy same disease) Dr. Sherry is an amazing human being and he helped me with my RND. I am now able to do so much more and am close to remission. If you are a child or a teenager, I seriously recommend you looking into CHOP for the RND program. If you ever want to talk, I am here. Your not alone. Peace.
this song thankyou it inspires me and all you out ther with this horrible pain crps not by choice 2 and half years after neck surgury only susposed to be 6 weeks not 4 and half months 24 7 in a coller i m finding ansewers a result from sugury (wcb think its in my head went to a shrink ha its not in my head ) hang in there billy aces@shaw.ca
@Mr1995superman1995 I am sorry to hear, I really hope and pray that you will be healed, being young you have a greater chance of remission. However top treatment is vital. Do you see a pain specialist, or Rhuemotologist or Neurologist?
@Mr1995superman1995 Hi again, you need to get into a pain clinic for help! You can't do this on your own! I pray and hope you have access to one!! Best wishes.
@Mr1995superman1995 You know @melgus99 is right. This is a fight you don't want to do alone. I'd try to search around for a good pain specialist or neurologist familiar with the disorder in your area.
I suffer from CRPS. And no, moving doesn't help. In fact seems to make things worse. I am on Methadone and Lyrica. I have seen Chiro's, Nueroligist, Physio, Acupunture,Prayer etc. So save the crap. I have been sleep deprived, taken all the pills and wake up screaming. I live like a wounded animal, who is being burnt from the inside out. So are the many others.7years and counting
I have RSD and I know it stinks :( I feel bad for anyone with this their is no relief. I have been hospitalized several times it started in my leg I have broken 7 times and now it has moved to my elbows and all i feel like doing is giving up like there is no place for me but my family is what keeps me fighting for a cure. I know the best thing to do is to always keep moving but that is almost impossible so to everyone else with this keep fighting there are always people there for you!!!
I have this disease. It affects both of my legs and feet. I am on Morphine and Fentanyl patches and I still hurt most of the time and spend a lot of time in bed
Yes, Me too but have not stayed in bed for years except after surgeries or illness. You MUST keep moving!!! Use the break-through meds to take care of self, sway to music, slow dance with your hands / feet. Mine is in rt hand/arm and my back surgery is what started all my problems. boy, what I would give to have just the extream back pain back.
Thanks for all your work on the clip......It is such a lonely disease especially when family dont want to know and punish you for being in constant pain and tut tut all the medication...so ignorant, uncaring very hurtful to the soul .We all want my 'old' self back....its not my fault...i will try again and send link....thankyou for believing
Man, I was so distressed when I woke up today because my 17 yr old min pin is ill/old and kept me up all nite that increased the crushing pain that I could not shower and go to church today, which I just started returning to in the last few months and after reading all these post just inspires me to try and help. I had been giving up. Not really, just want more than getting by. Please, We will find help, use the meds and your mind to move beyond the hell of pain.
Great Video!!! It takes people like you to bring light to those living with CRPS/RSD. I am currently working with those living with CRPS on the Physicians for Patients web project (web search CRPS + Physicians for Patients). The web project gives a chance to chat with people who understand what your going through, take a break from the "real" world, and give you the support we all need to beat this disease!I
What can I do at the end of my rope. Oct 26 2001, woke up frm 10+hr L-spine fusion screaming re:rt arm pain. Trying to pull IV out of Rt hand. Buring crushing Screaming pulling pillow from back of head. Never had C or T-spine proplems. Many discoverings came to light but Dr pretended all normal. 2 Wks finally Dr sent me to Neuro & found Rt. Arm blah, blah, denerveation and surgeon said neuro got wrong info. ?? Got MRI reprt C-5, 6 herniation, need fusion to releave pain.
Hi mel You have done a wonderful job on your video. As I have crps for nearly seven years.
I have had experience doctors and specialists asked me that only heard of it. I have lose friends over it. Some family members still find it diffcult to deal with.
take care as I know it is hard condition to live with 24 hours day. Bernie
I am so infused with compassion for all of you who have the same experiences, feelings, defeat and hoplessness I have had. I'm 48, and was born with a seed of faith that always gave me an understanding love for human compassion. I fight to keep going, find things including pain almost motivating except I have typed so much here I can't continue until I ice. my hands, can't feel the keys back soon, sharon
I HAVE HAD THIS DISEASE FOR NEARLY 9 YRS.,NOW!! IT ROBS U OF EVERYTHING!!! I SO HOPE I'M STILL HERE IF & WHEN THEY ""EVER"" FIND A CURE!!! THX'S FOR MAKING THIS VIDEO,,IT HITS THE NAIL ON THE HEAD,AS FAR AS RSD GOES!! I WISH low pain DAYS FOR ALL WHO HAVE RSD!!!
I have this, I have it in me legs, arms, and spine. Just today I came home from school because of the unbearable pain. I get made fun of all the time... I have been called a liar and a fake. It can feel like you are alone... If you have this or you know someone who does... Please leave a reply to my comment, or give it a thumbs up! Thank you, I would just liketo know I'm not alone!
My son was just diagnosed 2 weeks ago...he is 11 years old. We are just beginning this journey. Any and all informational outlets that can be suggested are welcomed. What a terrible curve ball this disease is!
@69SRS Please tell us or me how this started. I am researching gov research and will share as I find. This is this first time I have really started to get involved due to being sick of just getting by. I am active in self motivating since diagnosis in 2004 3 years since first woke up frm l-spine fusion. When diagnosed Dr told me to research & there were 4 things that scared me straight.
@crazygirl4h I have it in my leg, and I know how you feel. I constantly get called a faker at school. No one I talk to besides my doctor knows what it is, and when they learn that it is a type of neurological condition, I get made fun of more. I've started just telling people I hurt it to avoid weird looks and comments. You are definitely not alone.
@crazygirl4h I have severe Fibromyalgia (since birth) mis-diagnosed as severe rheumatoid arthritis until only a few yrs ago. I'm 38 now. My 14 yr. daughter has RSD and we think possibly fibro as well. It came on suddenly from a fall on ice when she was 12. She is still out of her wheelchair after a year of intense physical therapy. And doing pretty well. You are not alone. RSD and Fibro are misunderstood and misdiagnosed. I wish you the best. And the worst to those who make fun of you.
Please don't feel alone. Try your best to ignore those ignorant people who make fun of you. They have no idea what pain you are in. Living well is the best revenge, so just do your best to enjoy each day even if you are in pain. My sister Debbie has had RSD for 16 years. She has a dog that she takes to senior centers as a pet assisted therapy dog. The dog wears a vest and she can even take the dog into restaurants because it is her therapy dog Your life counts; you are good!
@crazygirl4h you most definitely not alone. Hang in there and try to ignore the ignorant. I was lucky to be dianosed early. But there have been many times when
I had an appointment with a doctor who'd never heard of rsd/crps. After I explain it they were happy to have leaned of this condition, and I pay them and leave. There are many types of meds, pt, and compassionte people in the health field. As I said earlier hang in there you are not alone,
@crazygirl4h You are not alone...I have it to. I know exactly the feeling your talking about. i was only 9 years old when diagnosed and did the program with a bunch of kids older then me...so even there i felt alone. keep pushing through. remember u will get through it
@crazygirl4h I know how does it feel! the only difference I have is no one can call me a liar because my arm is always swelled and red, like you can see it, you can see the huge difference... it doesnt only hurt, but it scares me as well... I reached the point where I hated my arm... I dont wear watch because of it, and I dont wear short sleeves.. sometimes I even think I dont want to get married because I wont be able to wear the dress I dream of, and I wont be able to put a ring...
I've had this for 28 years. To be made fun of for this is an outrage. To hear of kids poking a student with this, just to see him jump, it's sickening. Those kids need to live with RSD for a month. If somone poked my legs for their sick amusement, I'd break his neck. I often fear what an abuser could do to me if they knew I had this. They inflict agony without leaving a mark.. A nurse once scrubbed my affected feet in sheer rage.
I have had RSD/CRPS for 23 years after a motorcycle accident when I was 15. I have known no peace. The doctors have treated me like I'm some liar looking to cop some pain pills. The bottom line is I'm glad that this disorder is beginning to get the recognition it needs. RSD has literally robbed me of my life and freedom of mobility. I hope others need not suffer like so many of us have and are.
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.
Those who think CRPS is a form of pseudoneuropathy of psychogenic origin are NOT up to date with the latest research in CRPS. Including physical changes in the sensory nerves in the skin of the affected limb, and all the other research done by David, whose video response is above and his collegue Lorimer Mosely... plus heaps more from around the world! Did you know before they understood diabetes they too thought it to be of psychogenic origin!! GO FIGURE !!
my little 11 year old sister had this and it turned her life upside down and took over her life. It was terrible seeing someone i loved in that state. the pain is un-imaginable and unbearable... worse then child birth they say.but for everyone out there that has this disease, im sorry. But have hope! and remember gods with you. My sisters severe pain went away after just a year. It doesnt have to last forever, you can be just like my sister. and your not crazy for having this.
I have CRPS after repeated ankle inujries that never healed. I cannot even wear socks or shoes without being in pain. Doctors have never understood me. They dont realise the pain i go through. I wouldnt wish it on my worst enemy. Its the first thing i think about when i wake up and the last thing at night. Its a curse. Sometimes i wish i didnt wake up at all the next morning.
i got in a bad atv accident and i have this and its taken over my life and no one understands how fucking painful it is and how torn p inside i am cuz i cover everything up i may look like im having fun laughing but really inside im screaming and crying and falling apart i just want to race again and for the pain to go away that would mean the world to me
@atvchick09 I was in a bad atv accident also,,,got hit by a van and broke about 60 something bones,brain bleedin and swelling and so on,,,and now im stuck with this crap also
Thank you for this. I don't think I have this, but some of my symptoms sound very similar. I began burning severely all over after EMG/Nerve Conduction studies-results=severely abnormal. My sural nerve showed 39% demyelination and I am red all over. At first, no doctor would prescribe pain meds. Whatever I have is controlled somewhat w/Prednisone, Darvocet, Klonopin and Flexeril... Some relief comes w/frozen ColPac ice packs wrapped in a small towel moving as needed. May God bless all of you...
Hi, CRPS/RSD symptoms often overlap with diseases like MS, lupus, fibromyalgia, just to name a few. Demyelination is caused from MS. Most people with CRPS type 1 the EMG nerve conduction results are normal and there is no evidence of demyelination on MRI's either. God bless you, I really hope you find some peace amoungst your pain.
I have had this , extreme pain of fire in both arms. VERY intense, went on for days but faded in the right arm, continued to a 10 on the pain scale for several days in the left , no one had answers. And no one would give me anything. Infact I had just finished a bottle of Ty3 in relation to the third week or so of recovering from a major knee reconstruction and I thought it was a side effect possibly of the T3's, that was denied. Anyways it did go away. Strange and difficult things persist.
I was diagnosed with a pain syndrome recently, Rnd [Reflex Neurovascular Dystrophy]. I have physical therapy for it, i have going for a month and i do exercises daily to help it. I have faith that it will work. You just can't give up, it takes a whole lot of faith. I haven't been able to keep up with my normal lifestyle, but I know one day I will be able to again. Good luck and God bless you all. Stay strong for all of us.
i was diagnosted with this in October. Mines gotten way better thanks to physical therapy. i have already had it in both of my legs and one hand. i still have it but its not that bad anymore. but i didnt have crush anyone of my bones, mine just randomly came. it sucks :(
RSD can and does improve. If you told me that two years ago at the depths of my depression, at the height of the pain, I would have not believed you. But...it can get better. It has for me, allowing me to cut back a bit on the meds.
We must encourage those affected with this to not give up hope.
Bless you all that are dealing with this or support someone that is. From one who has felt the burn, there is nothing else like it. But it does get better. It is possible. Hang on to your hope!
Did you try physical therapy? It works soo much! I'm only 13 and I had it since this October and my leg would turn literaly black and i couldnt sleep at all. My raumotologist told me to do physical therapy and it works soo good. If your not trying physical therapy i think you should before it gets worse. Good Luck (:
@kamrynblanchard1 lol your lucky i got this when i was 13 and told the physical therapist about it and he didnt know what it was!!! Im 15 now and still have it
I wish I could get a dx, it's been 8 years of hell since I crushed my elbow. First told I had Neuropathy, but Neuro's couldn't figure my other symptoms, ice cold skin on fire. Mayo thought RSD, but spread test for months and 4 states away. Tried med schools near, told a nut. Twitches have taken my body. Gave up for a year and just stayed in bed. Lost business, home being foreclosed and no med insurance. It's hell. I don't know, but whatever it is, it will leave me with no choice but to die.
Have you joined any support groups? There are answers for you. I have had RSD for 5 yrs and like you have lost a lot. I belong to many and they really do help with information and where to find resources.
i was diagnosed about 2 yrs ago. and i know how terrible it feels to be told your crazy and that you are making it up. i joined an RSD support group at my local hospital and it is a great comfort to know you arent alone and that there are those out there who know your pain and can help keep your spirits up.
Awesome stuff in regards to a support group at your local hospital!! Sheesh I dunno if any of the staff in my local hospital knows what CRPS/RSD is!! Where you from?
to those of you that are experiencing this disorder there has been some doctors that have had good success in treating this. chiropractic neurologists are the ones to seek out. not all of them might know how to treat this.
hi, i'm 14 and got diagnosed with this disease 2 years ago. I would just like to thank you for this video because now I can make people see that I'm not over exaggerating and this pain I am feeling is truly real. Thanks again. Lydia
i have it too and im also 14. i was diagnosed july 1st 2009. but have had knee problems for 3 years. and some doctors though it was all in my head and i was faking it. my friends or family didn't believe me. but now its good to see that the word RND/RSD is spreading out so every1 can be familiar with it.
I suffer from this dreadfull, awfull dibilitating disorder. I have suffered for only 2 1/2 years but it feels like a lifetime. Thank you for the video. For the First time I feel like someone out there understands me. It's hard to discribe and try to make others understand what you go through when 99% of them have never heard of it nor your Dr.'s. Thank you for sharing. You have givin me the courage to STOP being silent. For years I have felt ashamed, weak and embarressed by this condition.
im 19 and had CRPS since i was 10 thanks to raming a bike seat into my talebone and haveing cancer that weaked the nervers.
i have leaned toblock out the pain and tell the docters it like a hum of a laptop/computer all the time and to my leavel of pain about a 5 ((normal peoples pain leavel: 8))and i get that all the time. and i have to the shock og my docters learned that there is driffent types of pain like theres time of the month pain and endo pain and lot other pain.
i was in a bad atv accident and i was diagnosed with this just recently and its horrible it takes ur life away i went from riding my atv and racing to laying in bed in pain....i couldnt handle the pain at school and its so hard to concentrate and im a girl and its so hard to shave my leg that has this awful condition....when i went to the doc last time when i was diagnosed he was touching my ankle leg and foot just rubing it and i couldnt stand it and my rents couldnt watch him do that to me
My friend has this and I have fibromyalgia.....both the beautiful peoples disease. It takes a long time for anyone to understand the depth of this pain. The changes your life goes through when you have it are devastating in all ways.
Very well put together video. This sounds so much like me. I have had it since Feb 1999. I am on my 5th SCS for treatment. I wish I never heard of CRPS. God Bless everyone and Hope you all have a pain-free night (well has much of one has we can have)
I bulged at disc at L5S1 and it overstimulated the sciatic nerve. I did not get substantive pain meds until I tried to kill myself, and that was 18 months after the onset. All any of the many doctors I saw in the first 3 months had to do was get me a caudal epidural or sympathetic nerve block. This would have calmed the nerve and ended the syndrome. I have been in constant pain for 13 years now. And I have recommended nerve blocks for my mother and my husband with success.
I have CRPS, and it isn't 'just in your head'. Anyone that has the gall to profess that idea is sadly ignorant of nerve diseases. CRPS has several very specific sypmtoms that can be tested and proven with doctors. Its not phycological, its PHYSIOLOGICAL as in physical. its a disease that effects many ppl and doctors have no idea how the nervous system works so they can't fix it. Not undersstood, is NOT the same as not 'real'
I was diagnosed with RSD in 2001 after a failed back surgery in july 2001. I'm on all the med's, the fentanyl patch, I'm in bed recovering now from a spinal surgery a week ago to have my DCS removed as it no longer worked out for me. I've had it since 2004 and highly recommend it! Medtronics makes it and I would still have it accept one of the leads was sitting on a nerve therefore creating MORE pain. We're NOT crazy, and wouldnt wish this on anyone! The pain is insane!
I was diagnosed with RSD in 2001 after a failed back surgery in july 2001. I'm on all the med's, the fentanyl patch, I'm in bed recovering now from a spinal surgery a week ago to have my DCS removed as it no longer worked out for me. I've had it since 2004 and highly recommend it! Medtronics makes it and I would still have it accept one of the leads was sitting on a nerve therefore creating MORE pain. We're NOT crazy, and wouldnt wish this on anyone! The pain is insane!
My mom and grandmother both have C.R.P.S. (they call it R.S.D.) and i have another nuerological condtion that effects the heart called postural orthostatic tachycardia syndrome (P.O.T.S.) apperently suceptability to nervous system fuckups are genetic
ive been diagnosed with RND, RSD, CRPS and im only 13...i cant use bed covers at night, it hurts to ride a car/bus, it hurts to wearr jeans, and i cant run or even walk normally anymore and it sucks!!! im going to the Pittsburgh Childrens Insitiute this week for therapy...any advice?
Yes, My Friends Michael Jared Crawford has been diagnosed with RSD/CRPS..... And he is 12. We Thought he wouldn't make it but Boston is the solution..... they worked him for 2 months only and now he can run.
Did Michael get sympathetic nerve blocks? Sometimes PT can restore mobility, but the pain returns. Epiduals given within the first 6months are essential, the sooner the better.
Hi there, I am assuming you mean the one with Cynthia Toussaint (patient). The only docs who say that are those uneducated or ignorant. Thanks anyways.
um every single sensation, thing you see or smell is 'in your head' When you have a disease that causes the brain to malfunction and tells you your leg is basically on fire and being stabbed at the same time, it is real. What you just posted is equivilent of telling someone who is blind because of a tumor in their brain is blind because it's 'just in their head' you should be ashamed of yourself
i have suffered with crps since 2006 after a work accident and broke both wrists i am still under the pain hospital i have also been told it's in my head how ridiculos! when the pain has disabled me
i was first diagnosed with this condition almost a year ago after spending 2 and a1/2 years having tests done, being in undiscribable pain, being told it was all in my head. i first got this condition at the age of 12, i am now almost 16 and am constantly in hospitals that dont know what to do. i give them credit though, they try their hardest. this condition is just so unknown and it needs to be taught to everyone. your video discribes this conditioning exactly as it is. thank you =]
Thank you for this wondeful video. It describes this perfectly. I have had this for about 6 months and the pain just keeps intensifing even with the treatments that have been suggested and preformed. Thank you for placing a video that I can send to my family to give them some kind of idea of what i am going through.
This video is a wonderful way to articulate the feelings and pain associated with CRPS. I suffer with this illness and appreciate this video so that others can understand what we are experiencing. Thank you.
As someone with CRPS, thank you. I sent this out to friends and family to help them understand my condition. My CRPS was caused by a severe electrical injury just over a year ago. I went for months without the proper treatment. I hope (know) that things will get better. Your video makes a huge difference! Thank you.
thank you for this video went i view this i cry i did no know other have crps as well i thought it was me i have crps two years ago it is a demon by it self
My daughter is 12 years of age. Every day she has pain... every evening her feet, shins, thighs, ribs and sometimes arms are riddled with pain and burning sensation. The slightest breeze of fresh air triggers an episode of pain.. my daughter has CRPS and i cant even imagine the pain, my family just watch and try to comfort... but how can we comfort without a cuddle!
hey im 13 and also have this conditition, the best thing i can do is "Power through The Pain" ive been recently diagnosed about 2 moths ago...there is a book on RND/RSD that has a lot info and the author has the condition too. Good Luck with RND
i have this and have since i was 16 NEVER push through the intense pain because if you do it is proven to cause the pain to spread more quickly. please see a chronic pain specialist. RND and RSD are outdated, what ppl knew of this disease in WW1 when they first 'found' it. you have to use it of course, stretch excersise, but never just 'push' through!
Thank You for posting! I first got RSD/CRPS from severe electrocution at three years of age. We were too poor to go to the doctor much less seek out a diagnosis for the bizarre symptoms that followed,at age 25 i under went 5 reconstructive surgeries on my arm/wrist/hand, that set the RSD into a vicious frenzy.Every nerve fiber in my body feels hyper sensitive, even the texture of paper is too much for my fingers to touch sometimes. People Thought I was Crazy. THANK YOU for Posting.
There is a successful treatment in the U.S for RSD/CRPS and other chronic pain You can go to Google Book Search and read on line the first part of a book about it. This treatment has been used for over 15 years. The book is PAIN BANISHMENT. The doctor has had RSD himself and put himself in remission with his treatment. He understands as no one else can what RSD sufferers are going through. He's been there. This is worth checking out.
thank you for this awesome video...it says it all. i have rsd in my left foot and like others here have said and the video says it is the worst pain imaginable. let's spread the word about CRPS/RSD and keep raising awareness. we are going to do this...we have to put out the fire. keep praying and let's have hope for a cure for RSD! God bless you all.
How do you hep a young girl obtain corporate sponsers for an RSD fundraiser as it th event draws near? It seams that local businesses will try to help but the larger businesses do not respond..
I had RSD and i hate how people didnt understand i love this video and am going to use it in my english presentation on my RSD thanks 4 making the video and i am a survivor of RSD becuase of DR.JIM!!! u should try him... every one
May I please say that there is complete healing available. So much discouragement is in the world today when it comes to being healed by the lord, because so little is seen. My heart goes out to people in this pain, but worse of all, my knowing how they can be healed and not being able to do anything with them. I've seen so many touched by his healing power, that I can not number them. I just pray that the lord would open his will to you, and cause you to be completely healed.
@dp6224 I have decided to show your comment. thank you for it. I know some people may be upset if they pray and pray and nothing happens, but it is the will of the Lord and for this people do remember Romans 5:3. .....suffering produces endurance, and endurance produces character and character produces hope. If not in this life you will be pain free in the next eternal one with the Father.
For those not upset, healings do happen just as they did in the bible. Nothing is impossible with God!
I am so tired of people not understand the limitations this disease places on a person. Everyone just assumes I choose not to do things, when the reality is that I can't do them. I am so tired of everybody telling me it is in my head...go see a shrink and all will be fixed...I am tired of doctors not understanding and even worse not caring.
I am so glad you put this out there..i have rsd and i have for 4 years now...it is the most agonizing pain in the world, nobody could imagine it unless they felt it themself..thank you again for posting this
Bless you melgus99. For putting to words, the furstrations, the pains, the blatent insanity one can feel from this and being misunderstood. I wish those who have seen this devil a more peaceful day tomorrow.
when I first saw this, I thought-finally, something to explain my pain to others- now I watch it myself when emotionally overwhelmed w/my RSD-it is healing! I know i'm not alone-but I wish there weren't others living w/this-I have had such emotional pain in life-now I empathize w/all who feel physical pain, too-keep hope-God showed me a glimpse of His pain for our physical pain-I was overwhelmed! He cares for us-enough that He allowed excruciating pain on the cross to save us! Praying for u!
good job on the video and thes is a message to everyone weth RSD plees dont gev up keep fighting and living one day we thet suffer from things like thes well be fixed and we can live a pain free life i dont hav RSD butt i do understand i hav CEP i can naver feel the warmth of the sun on my face or play out side the suns light is like aside and fire to my skin and eyes. thanks for reading thes tack to you all lader buy buy.
my friend was just diagnosed with this. she is only in seventh grade and is complete pain. i havent seen her in a long time and i miss her... im kinda scared too. this has helped me understand better about whats going on. thank you for making this it made me cry but thank you<3
haleeeye5 9 months ago
I am complex regional pain syndrome and I can attest to the horrible, burning, never-ending pain. I am on Fentanyl patches, Percocet, and Lyrica for the pain; all of this hardly works. I also have to take medication to sleep, but it barely works. Medical Science does not seem to have answers; it may never have the answers to this disorder.
What makes this worse is that those around each of us do not understand the pain we are in. My girlfriend always expects me to do stuff I cannot.
mhouse1712 9 months ago 4
Thank you for putting this video out there not enough people know what people suffer through. My mom has had RSD for 9 years. I see it becoming worse everyday. Its at the I don't look sick disease stage and most doctors have no clue what it is. I have made a documentary titled Pain on my channel please check it out. I'm helping to put out the fire.
ashleymccanncan 9 months ago 2
I have this in my right arm / shoulder. I have been in hospital for 6 months and in intense physio therapy! i never was able to explain how much it hurt and everyone wonders why i am never at school etc. i was 14 when i was diagnosed, and i am now 15. the only way i can explain it is that my life is a little bit of hell :( lets hope we all heal!
savvymaterialgirl 9 months ago
I've just been diagnosed with CRPS. I've never heard about it until my doctor told me I had it and I did some research on the internet. I pray for myself and others that we don't have to suffer anymore. I pray that medications will help and I can go on with my life. I'm 47 years old and don't want to end up in a wheelchair. I still have the mentality of a teenager to walk an amusement park and go on a rollercoaster. Dear GOD, please help us ALL. Amen.
LNJR011 10 months ago 2
Aw The Similarities Are So Alike! Go to google and type in "mett the gardasil girls, kahlia from new zealand" its my story. mmine is believed to be set off by a vaccine as scarey as it is, this is my story before they diagnosed me! If you want to read my other article i got published email and let me know its all about my journey!
92knicole 11 months ago
A Question For Other Sufferers. Has This Set Off Any Other Disorders?? I Know Also Suffer IBS, Irritable Bowel Syndrome and Cant Eat Quite A Few Things! Its Hard
92knicole 11 months ago
@92knicole I have not had the connection confirmed, but IBS is caused by sympathetic nervous system dysfunction, like CRPS can be.... I have had IBS and bladder probs.
melgus99 11 months ago
@92knicole I have CRPS and also have IBS, like you. I also have "irritable bladder,: whereby I must make frequent trips to the bathroom. I have Fibromyalia, TMJ, frozen shoulder or "impingement syndrome," whichever one prefers. I have Narcolesy, which, like CRPS is an auto-immune syndrome. Yeah, my life's a real day at the beach.
slowhandfan01 10 months ago
i was diagnosed 16 years ago and was just told yesterday that i was in stage five i just posted a video that was take on me i was the first person in the world to receive these new braces
pyke6220 9 months ago
@92knicole
I know how my son felt after seeing this video. Thankfully, the Lord has answered our prayers by setting him free from pain from a new medical treatment called the Calmare Pain Relief treatment that teaches the nerves to send a no-pain message instead of the pain message they've gotten stuck on. He's been pain-free and off meds since last June 2010, praise God! And so have four other people we've personally told about. Please Google Dr. D'Amato and Calmare Pain Relief. God bless
klmullican 8 months ago 2
I Have This And I Cried When I Saw This! I Never Knew The Right Words To Describe Everything And When I Was Diagnosed With This Many Of My Friends Abandoned Me Because I Am A "Freak" (Im Only 18) But Since I Posted This Link On My Facebook With The Comment "I couldnt have described my pain any better if i had written it myself" ! This Is Amazing As Much As It Is Sad! I Watch This Regularly Now As Support! Thank You! and God Bless You. I Feel If we Keep Praying We Will Be Healed One Day
92knicole 11 months ago 9
@92knicole keep praying, I have been given some relief and I owe it to the Lord and the people praying for me!! Never lose faith, in His time he will reveal His plan for you. Jeremiah 29.11 is a great verse!
God Bless
melgus99 11 months ago 5
thank you for this video.
I have CRPS/RSD since 4 year, I'm in a wheelchair permanently. It sucks. But I focus me on the good things in live, and thank God when I've a moment with lesser pain.
My muscles are also very weak, and got weaker and weaker, and my bones aren't strong too.
I'm glad that this vid gives a little more awerness on CRPS. Lots people don't know about it. Even a lot of nurses I got home, I have to explain what it is.
vlaamseleeuw1985 11 months ago
I have RSD too. I posted my story as a video response. please approve it.
chocolatecamera 1 year ago
i know what the pain is like i am 14 with RSD. i have been on so much meds and gained so much weight, it is scary. i hate to say this but i am glad i found this video it reminds me im not alone there are others who now this pain its not just me, im not crazy. for me sleep is releif were i can dream about what can be but why is releif so hard to find? i ask myself that question everyday....
BaByJ2196 1 year ago
Hi, I was diagnosed with CRPS a little less than a year ago. I have tried 2 sympathetic blocks and am getting ready for number 3. The first one gave me almost 3 weeks of 0 pain. It was blissful. The second one did nothing, if anything I think it's getting worse. I am 43 years old and feel like the life I fought to make for myself was a waste. In 2003 I had a gastric bypass, and as a result lost 230 lbs. however, since my diagnosis I have put on 45 lbs. I feel hopeless.
highlandeer00 1 year ago
Fantastic work!
Fanagmore 1 year ago
@Fanagmore Thank You!
I wrote this when I was in a flare up in the early hours of the morning, and it was a great experience to get it off my chest!! So a BIG thank you! It helped me to be able to express it all too! :)
melgus99 1 year ago
I have cerebral palsy. In 1983, during one of my operations, something went badly wrong. I woke up from surgery on both legs screaming in agony. They had to take my cast off because wearing it was agony. Over time, I learned Ihat putting on shoes and socks, cutting toenails, rubbing my feet with a washcloth and running water causes agony. I watched my toenails become ridged and cracked. My toes curled up under my feet. I must constantly wear protection for my legs and feet to avoid
josephkaeble 11 months ago
brushing up against something. I got this way thanks to the best doctors in the world. My parents were angry at me for my worsened condition and when I did not embrace the recommended therapy of rubbing my affected lower legs and feet with a towel. (My relationship with my parents was abysmal to begin with.) For 28 years, there has been no diagnosis or treatment. For most of that time, I have been too ashamed of what happened to even mention the city where the operation took place or even the
josephkaeble 11 months ago
surgery itself. A second botched operation at age 21 caused such anger in my parents and emotional abuse that I left home and moved 500 miles away rather than take the fall for a botched surgery I never wanted. That second mistake would eventually require regular doses of morphine and kill my will to live. For 28 years, no doctor could even put a name to the chaos at age 12 that ruined my life. To this day, I need a nurse to even cli[p my toenails and showers and getting dressed are tortures.
josephkaeble 11 months ago
I feel blame and shame. No one ever told me what went wrong. No apology or support groups. Thanks to a video on Youtube, I now have a name for 50% of my chronic pain hell. I hope the doctor who did this to me will rot in hell. No lawsuit can possibly restore my destroyed life and at any rate, the hospital's lawyers would put me obn trial if I did sue. CRPS ended my childhood and ruined my life. Thank you very much. 28 years to find the truth....but my life will go on as before.
josephkaeble 11 months ago
I'm a nurse practitioner and just found out aboutCRPS/RSD a couple of weeks ago. Yep, a patient presented with all the symptoms but I was lost. Thankfully I work with a physician who knew all about it, so the patient got off to a fast start with an early diagnosis and treatment. Thank you, Melgus99 for an excellent presentation. veryWest
verywest 1 year ago
i am 36 i have been in excruciating pain, I have tried physical therapy lots of different narcotic pain drugs, to no avail. My prayers were answered and got an appt with a new pain doctor who is one of the leading doctors in CRPS in the country. I pray for all those suffering from this dabilitating disease. I pray for days with tolerable pain. Thats all I can ask for myself and others with CRPS.
the6ftmommykat 1 year ago
I was injured at work in October 2004, it wasn't till May 2006 that I learned my pain is caused by RSD... six years now since the injury... hoping for the neurostimulator implant... but been waiting 2 years out of the six years for this surgery to be done... RSD is a nightmare that you just can't wake up from.... the pain never ends
TurtleGirlIvey 1 year ago
I just found out my friend has cprs she has been in and out of hospital for months waiting for the docs to figure out wats wrong, they have just sent her home with pain meds coz they can't do anything about it... She has it in her right arm because a nurse hit a nerve wen implanting the implanon or Birth control, then wen the docs were trying to fix that they hit a nerve in her foot and now its there too... I don't know what to do to comfort her or make her feel better...
jellysox 1 year ago
I am 22 yrs old and I have been diag. with RSD. I will be having a neurostimulator implant put in , in Dec. RSD is very painful and has caused a lot of depression for me.. I had the SCS trial it was AMAZING! It is something anyone with this horrible condition to try..I have tried strong pain meds, spinal cord blocks, phys therapy and 3 surgeries to no avail..I pray God's help to everyone who suffers with this! There is hope though!!
Lewisangel1 1 year ago
I have CRPS, and have seen countless specialists. Its a very little understood disease. I spent a couple of years taking 380 plus of Oxycontin daily, and honestly thought it relieved the pain. I'm told there was little relief, just more than 24 months of little to no recollection. A functioning idiot, that made stupid and poor decisions until it was realized that I had no idea...period. Now, I know I have continuos pain, but at least I know what I'm doing. There are no more tears.
Downedworker 1 year ago
I've been told I have RND or RSD. I have no swelling or physical changes but I feel the pain. I've had this for 5 years and have been in and out of wheel chairs and hospitals. I'm 16 now and this has robbed me of my life. I know what it feels like to be rejected by family, friends, classmates, and teachers. After fighting this for so long I've started to become paralyzed. I wish there was something that I could do, or something that can help. We've exhausted almost every option.
bluetear222 1 year ago
@bluetear222 Damn! This is a tough one. It will be 5 years for me on the 14th of next month. Now it has moved into my chest, and resembles a heart attack. I am much older than you, and had my retirement arranged for before this happened. My fondest wish is there could be a cure found, or if not that, to have everyone understand what we are going through. Its hard. To suddenly lose the ability to do things you once did without thinking makes it very difficult to continue. Please stay strong.
Downedworker 1 year ago
This is defiently something I recognise...if i was diagnosed earlier I would of not have suffered for a lifetime..instead while i was experincing it in the beginning i was sent to a psycritics by a neurosurgent and the psycritics said it's not in your head...fire this doctor...so we did...later ...much later...i was diagnosed RSD
wvanitawilson 1 year ago
Wow! What an accurate, informative video that is! I, too, have RSDS and know what you're going through is real. Thanks for raising public awareness. God bless you!
IntheBlinkofanEye1 1 year ago
my best friend has this i never realised what it was i thought he was over reacting but now i feel sooooo bad i just want to hug
bgrimsey157 1 year ago
My 12 yr. old daughter, battled with RSD for a year, although recently in a relapse, the last 4 months were spent in remission, no more Lyrica, and free, painless movement. It is painful, and rigorous therapy, but there is hope. Bless and keep all those suffering from RSD. Mary's favorite verse. I can do ALL things through Christ who strengthens me.
His love abound~and gentle hugs 8)
mamahenrobin 1 year ago
Thank you for sharing. I'm a qualified nurse and knew that an ok x-ray and ultrasound was half the answer. I was diagnosed this week by a shoulder specialist after 6 months of agonising physio, being called a malingerer and having my pain disbelieved. I'm going to a pain management specialist and will start physiotherapy again with the new diagnosis of CRPS Good luck to all who are going through this debilitating condition. Be kind to yourself and ask for help. Don't give in or give up.
Lucrecia136 1 year ago
@Lucrecia136 Exactly why we need awareness! Hope your treatment is helping with both function and pain! My wait for a diagnosis was too long over a year! I am doing well now anyways, but it got really bad before it improved! and 6 years of it really bad!!
melgus99 1 year ago
OMG i've just been diagnosed with this in my right arm , after an injury at work ,,,,,, thought ya--- a while to rest, heal and ill be back at work ,,,,, now after this video ill be asking my dr for more detailed prognosis ,,,, i'm a physical therapist myself , this explains why my own therapy and the pain killers haven't worked , thanks for the posting ,,, as scared as i now feel , its good to know the full details.
circleofmediums 1 year ago
hello again all you wonderful people with crps out there its aces here again just to say im having a day that hurts so just to say sara thanks again for this song it keeps me going plan b this week injection in my neck to hopefully ease some of this horibble pain look up take care crps people im not going to stop i will let you know how the neck injection went god bless
acesiiii 1 year ago
@acesiiii Is it the "ganglion block" injections you are going for? I had them 3 times, and nothing. I'll be praying they work for you. How long have you been diagnosed with this? Be 5 years for me on the 14th of November, but feels like 2 lifetimes.
Downedworker 1 year ago
hello, im 14 and just ot diagnosed with this today, after arguing with drs for 2 and a half years. this video has proved to me that im not alone with this, that there are other people in the same situation, thank you for this excellent video, it will help me with info for my school medical room and other teachers to make them aware of this very much unknown condition, thank you again : )
kayleigh0608 1 year ago
hey there you amazing people with crps again its aces here things are getting a little better with more gabamptom to a point 2100 mgs keep trying ill stop there plan b neck injections left side neck after neck fusion im scared but take care thanks sara again yur song insipres me so much god bless
acesiiii 1 year ago
Thank you for shering this Both myself and 16 yr old have RSD mine is better most of the time hers is not after 2 yrs. We have found help at the Cleveland Clinic where there was no help or hope before for everyone out there that suffers stay strong and don't give up EVER xoxox KIT and Em
jensenmar1 1 year ago
I have just found out that I have RSD. I had never heard of it before! I was shocked to hear I had this RSD and that it is so horrid and still you never hear of it!
Thank you for putting this information out there so the average person can get an idea of what it is to have this burning and I would say stinging pain at times. We must get the word out there and we must stay strong in the face of ignorance!!
Northmaiden 1 year ago
OMG! That is terrible. I feel so horrible for people with CRPS. Or RSD. I hope they find a cure and soon!!
lovemybones88 1 year ago
electroneuromedular therapy has cured or put in remission crps there is a DR. in puerto rico named osvaldo font that is a neurophisyologist that invented a method called eletro neuro medular therapy he has raised people from wheel chairs and cured migraine and treats rsd
funface69 1 year ago
@funface69 thank you for sharing, however we should be aware that all treatments come with risks and not all treatments work for everybody. Each patients CRPS/RSD can be so different and also in its response to different treatments.
Thanks tho :)
melgus99 1 year ago
is this different than Sensory Processing disorder which is a neurological condition?
rprimeau95 1 year ago
wow! amazing video! im 24, and about 6 months ago i herniated a few disc's in my back and its causing my leg to feel like theres a blowtorch on it at all time unless im on my meds. my back does hurt where the injury is, but no where near what my leg feels like...ive NEVER heard of this until i stumbled on a girls videos just now and continued looking at others..im not big into religion but if there is a higher power out there, may it bless you all!
WhnEvilStrks 1 year ago
I was diagnosed with RSD 5 years ago. It is now moving from my right hand into my neck. The dr just made me get a Nerve Conduction Study, and now I feel like the day I was diagnosed all over again......my thoughts and prayers are with all who suffer from this horrible condition!!!
tpederson11 1 year ago
well good morning 6 am sat just checking in with all you amazing people with crps out there thats what it is day by day its ok too fell like you feel its what it is unfortunatly hang in there you will get by i myself fell like i will suceed in an answer im not going to quit i seen another surgen thurs and will continue too life feels so empty sometimes but its not we have sara song i feel like this song gives me that strength and my grandkids and my kids its so terrible they see this aces@shaw
acesiiii 1 year ago
hey you crps amazing people ive been digionesed with this powerfull thing..i had fusion neck 2 years ago this is the result im still wondering how i can fix this well the loved ones around you will help thanks sara i listen too thos often 4 5 timess a day it gives me strengh the angels thanks take care we will get through this aces@shaw,ca/billy
acesiiii 1 year ago
I have had CRPS since I was 10. It took them 2 years to diagnose. I am not almost 17. Last year, I went to Children's Hospital of Philladelphia. To the RND prorgram (Reflex Neurovascular dystrophy same disease) Dr. Sherry is an amazing human being and he helped me with my RND. I am now able to do so much more and am close to remission. If you are a child or a teenager, I seriously recommend you looking into CHOP for the RND program. If you ever want to talk, I am here. Your not alone. Peace.
stephhenna 1 year ago
I have broken My skull,7 ribs, both hips, pelvis, ect. and it is not comparison to have CRPS
Mr1995superman1995 1 year ago
this song thankyou it inspires me and all you out ther with this horrible pain crps not by choice 2 and half years after neck surgury only susposed to be 6 weeks not 4 and half months 24 7 in a coller i m finding ansewers a result from sugury (wcb think its in my head went to a shrink ha its not in my head ) hang in there billy aces@shaw.ca
acesiiii 1 year ago
Im 15 and i have CRPS since i was 13 due to bad wreck I was in,, Is there anything to help or treat it?
Mr1995superman1995 1 year ago
@Mr1995superman1995 I am sorry to hear, I really hope and pray that you will be healed, being young you have a greater chance of remission. However top treatment is vital. Do you see a pain specialist, or Rhuemotologist or Neurologist?
melgus99 1 year ago
@melgus99 I saw a neurologist about 2 years ago and she`s the one that told me that I have it,, Since then I havent seen anyone
Mr1995superman1995 1 year ago
@Mr1995superman1995 Hi again, you need to get into a pain clinic for help! You can't do this on your own! I pray and hope you have access to one!! Best wishes.
melgus99 1 year ago
@melgus99 Wow,, I dont think there is a pain clinic anywhere around were I live,,, :'( ,,, 2 years of Hell
Mr1995superman1995 1 year ago
@Mr1995superman1995 You know @melgus99 is right. This is a fight you don't want to do alone. I'd try to search around for a good pain specialist or neurologist familiar with the disorder in your area.
Naanad 1 year ago
This video is so touching. I also suffer with RSD and I would like to link this video
to my site: rsd.talkspot.com
Best wishes to you.
toppdsignr 1 year ago
@toppdsignr Thank You, and No problem you can link :)
melgus99 1 year ago
I suffer from CRPS. And no, moving doesn't help. In fact seems to make things worse. I am on Methadone and Lyrica. I have seen Chiro's, Nueroligist, Physio, Acupunture,Prayer etc. So save the crap. I have been sleep deprived, taken all the pills and wake up screaming. I live like a wounded animal, who is being burnt from the inside out. So are the many others.7years and counting
Zenderated 1 year ago
I have RSD and I know it stinks :( I feel bad for anyone with this their is no relief. I have been hospitalized several times it started in my leg I have broken 7 times and now it has moved to my elbows and all i feel like doing is giving up like there is no place for me but my family is what keeps me fighting for a cure. I know the best thing to do is to always keep moving but that is almost impossible so to everyone else with this keep fighting there are always people there for you!!!
divinggirl2010 1 year ago
Terrific Video You've Put Together...Many of us With Porphyria Can Totally Relate To The Exact Same Pains, & All At Once. Blessings Be Safe... (O:
moonbearwolf 1 year ago
I have this disease. It affects both of my legs and feet. I am on Morphine and Fentanyl patches and I still hurt most of the time and spend a lot of time in bed
tayllor2900 1 year ago
Yes, Me too but have not stayed in bed for years except after surgeries or illness. You MUST keep moving!!! Use the break-through meds to take care of self, sway to music, slow dance with your hands / feet. Mine is in rt hand/arm and my back surgery is what started all my problems. boy, what I would give to have just the extream back pain back.
gsthobois 1 year ago
Thanks for all your work on the clip......It is such a lonely disease especially when family dont want to know and punish you for being in constant pain and tut tut all the medication...so ignorant, uncaring very hurtful to the soul .We all want my 'old' self back....its not my fault...i will try again and send link....thankyou for believing
runecathy391 1 year ago
Man, I was so distressed when I woke up today because my 17 yr old min pin is ill/old and kept me up all nite that increased the crushing pain that I could not shower and go to church today, which I just started returning to in the last few months and after reading all these post just inspires me to try and help. I had been giving up. Not really, just want more than getting by. Please, We will find help, use the meds and your mind to move beyond the hell of pain.
gsthobois 1 year ago
Great Video!!! It takes people like you to bring light to those living with CRPS/RSD. I am currently working with those living with CRPS on the Physicians for Patients web project (web search CRPS + Physicians for Patients). The web project gives a chance to chat with people who understand what your going through, take a break from the "real" world, and give you the support we all need to beat this disease!I
dg3147 1 year ago
@dg3147 Hi Yes I am a member!! It ia an Awesome site and I recommend it to all!
melgus99 1 year ago
What can I do at the end of my rope. Oct 26 2001, woke up frm 10+hr L-spine fusion screaming re:rt arm pain. Trying to pull IV out of Rt hand. Buring crushing Screaming pulling pillow from back of head. Never had C or T-spine proplems. Many discoverings came to light but Dr pretended all normal. 2 Wks finally Dr sent me to Neuro & found Rt. Arm blah, blah, denerveation and surgeon said neuro got wrong info. ?? Got MRI reprt C-5, 6 herniation, need fusion to releave pain.
gsthobois 1 year ago
Hi mel You have done a wonderful job on your video. As I have crps for nearly seven years.
I have had experience doctors and specialists asked me that only heard of it. I have lose friends over it. Some family members still find it diffcult to deal with.
take care as I know it is hard condition to live with 24 hours day. Bernie
fredisready 1 year ago
I am so infused with compassion for all of you who have the same experiences, feelings, defeat and hoplessness I have had. I'm 48, and was born with a seed of faith that always gave me an understanding love for human compassion. I fight to keep going, find things including pain almost motivating except I have typed so much here I can't continue until I ice. my hands, can't feel the keys back soon, sharon
gsthobois 1 year ago
I HAVE HAD THIS DISEASE FOR NEARLY 9 YRS.,NOW!! IT ROBS U OF EVERYTHING!!! I SO HOPE I'M STILL HERE IF & WHEN THEY ""EVER"" FIND A CURE!!! THX'S FOR MAKING THIS VIDEO,,IT HITS THE NAIL ON THE HEAD,AS FAR AS RSD GOES!! I WISH low pain DAYS FOR ALL WHO HAVE RSD!!!
buckqd888 1 year ago
I have this, I have it in me legs, arms, and spine. Just today I came home from school because of the unbearable pain. I get made fun of all the time... I have been called a liar and a fake. It can feel like you are alone... If you have this or you know someone who does... Please leave a reply to my comment, or give it a thumbs up! Thank you, I would just liketo know I'm not alone!
crazygirl4h 1 year ago 46
My son was just diagnosed 2 weeks ago...he is 11 years old. We are just beginning this journey. Any and all informational outlets that can be suggested are welcomed. What a terrible curve ball this disease is!
69SRS 1 year ago
@69SRS Please tell us or me how this started. I am researching gov research and will share as I find. This is this first time I have really started to get involved due to being sick of just getting by. I am active in self motivating since diagnosis in 2004 3 years since first woke up frm l-spine fusion. When diagnosed Dr told me to research & there were 4 things that scared me straight.
gsthobois 1 year ago
@crazygirl4h I have it in my leg, and I know how you feel. I constantly get called a faker at school. No one I talk to besides my doctor knows what it is, and when they learn that it is a type of neurological condition, I get made fun of more. I've started just telling people I hurt it to avoid weird looks and comments. You are definitely not alone.
turtlemeg10 1 year ago
@crazygirl4h I have it also and Im 15
Mr1995superman1995 1 year ago
@crazygirl4h I have severe Fibromyalgia (since birth) mis-diagnosed as severe rheumatoid arthritis until only a few yrs ago. I'm 38 now. My 14 yr. daughter has RSD and we think possibly fibro as well. It came on suddenly from a fall on ice when she was 12. She is still out of her wheelchair after a year of intense physical therapy. And doing pretty well. You are not alone. RSD and Fibro are misunderstood and misdiagnosed. I wish you the best. And the worst to those who make fun of you.
evh7775150 1 year ago
@crazygirl4h
Please don't feel alone. Try your best to ignore those ignorant people who make fun of you. They have no idea what pain you are in. Living well is the best revenge, so just do your best to enjoy each day even if you are in pain. My sister Debbie has had RSD for 16 years. She has a dog that she takes to senior centers as a pet assisted therapy dog. The dog wears a vest and she can even take the dog into restaurants because it is her therapy dog Your life counts; you are good!
Pamthecam 1 year ago
@crazygirl4h you most definitely not alone. Hang in there and try to ignore the ignorant. I was lucky to be dianosed early. But there have been many times when
I had an appointment with a doctor who'd never heard of rsd/crps. After I explain it they were happy to have leaned of this condition, and I pay them and leave. There are many types of meds, pt, and compassionte people in the health field. As I said earlier hang in there you are not alone,
Kwipinky 1 year ago
@crazygirl4h You are not alone...I have it to. I know exactly the feeling your talking about. i was only 9 years old when diagnosed and did the program with a bunch of kids older then me...so even there i felt alone. keep pushing through. remember u will get through it
candychick1996 1 year ago
@crazygirl4h I know how does it feel! the only difference I have is no one can call me a liar because my arm is always swelled and red, like you can see it, you can see the huge difference... it doesnt only hurt, but it scares me as well... I reached the point where I hated my arm... I dont wear watch because of it, and I dont wear short sleeves.. sometimes I even think I dont want to get married because I wont be able to wear the dress I dream of, and I wont be able to put a ring...
umz3eet 1 year ago
I've had this for 28 years. To be made fun of for this is an outrage. To hear of kids poking a student with this, just to see him jump, it's sickening. Those kids need to live with RSD for a month. If somone poked my legs for their sick amusement, I'd break his neck. I often fear what an abuser could do to me if they knew I had this. They inflict agony without leaving a mark.. A nurse once scrubbed my affected feet in sheer rage.
josephkaeble 11 months ago
I have had RSD/CRPS for 23 years after a motorcycle accident when I was 15. I have known no peace. The doctors have treated me like I'm some liar looking to cop some pain pills. The bottom line is I'm glad that this disorder is beginning to get the recognition it needs. RSD has literally robbed me of my life and freedom of mobility. I hope others need not suffer like so many of us have and are.
UNSEENPATRIOT 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
Hi eyedea81,
Those who think CRPS is a form of pseudoneuropathy of psychogenic origin are NOT up to date with the latest research in CRPS. Including physical changes in the sensory nerves in the skin of the affected limb, and all the other research done by David, whose video response is above and his collegue Lorimer Mosely... plus heaps more from around the world! Did you know before they understood diabetes they too thought it to be of psychogenic origin!! GO FIGURE !!
melgus99 1 year ago
my little 11 year old sister had this and it turned her life upside down and took over her life. It was terrible seeing someone i loved in that state. the pain is un-imaginable and unbearable... worse then child birth they say.but for everyone out there that has this disease, im sorry. But have hope! and remember gods with you. My sisters severe pain went away after just a year. It doesnt have to last forever, you can be just like my sister. and your not crazy for having this.
CarlyHoban 1 year ago
I have CRPS after repeated ankle inujries that never healed. I cannot even wear socks or shoes without being in pain. Doctors have never understood me. They dont realise the pain i go through. I wouldnt wish it on my worst enemy. Its the first thing i think about when i wake up and the last thing at night. Its a curse. Sometimes i wish i didnt wake up at all the next morning.
ezzie82 2 years ago
i got in a bad atv accident and i have this and its taken over my life and no one understands how fucking painful it is and how torn p inside i am cuz i cover everything up i may look like im having fun laughing but really inside im screaming and crying and falling apart i just want to race again and for the pain to go away that would mean the world to me
atvchick09 2 years ago
I am sorry you are going through this. If there is any solace, know that it can improve. It can get better. The key is early, aggressive treatment.
If someone had told me what I am telling you, I would not have believed it. But, it has improved with me, and it can with you, too.
It really takes someone that knows this pain to understand it. There is no describing it.
Hang in there...it can and does get better!
answerstolucky 2 years ago
@atvchick09 I was in a bad atv accident also,,,got hit by a van and broke about 60 something bones,brain bleedin and swelling and so on,,,and now im stuck with this crap also
Mr1995superman1995 1 year ago
great video! It was a beautiful song and a beautiful meaning! I'm goin to pray for those people.
Glitergirl3 2 years ago
Thank you for this. I don't think I have this, but some of my symptoms sound very similar. I began burning severely all over after EMG/Nerve Conduction studies-results=severely abnormal. My sural nerve showed 39% demyelination and I am red all over. At first, no doctor would prescribe pain meds. Whatever I have is controlled somewhat w/Prednisone, Darvocet, Klonopin and Flexeril... Some relief comes w/frozen ColPac ice packs wrapped in a small towel moving as needed. May God bless all of you...
scarlettsix 2 years ago
Hi, CRPS/RSD symptoms often overlap with diseases like MS, lupus, fibromyalgia, just to name a few. Demyelination is caused from MS. Most people with CRPS type 1 the EMG nerve conduction results are normal and there is no evidence of demyelination on MRI's either. God bless you, I really hope you find some peace amoungst your pain.
melgus99 2 years ago
I have had this , extreme pain of fire in both arms. VERY intense, went on for days but faded in the right arm, continued to a 10 on the pain scale for several days in the left , no one had answers. And no one would give me anything. Infact I had just finished a bottle of Ty3 in relation to the third week or so of recovering from a major knee reconstruction and I thought it was a side effect possibly of the T3's, that was denied. Anyways it did go away. Strange and difficult things persist.
cfqpa 2 years ago
I was diagnosed with a pain syndrome recently, Rnd [Reflex Neurovascular Dystrophy]. I have physical therapy for it, i have going for a month and i do exercises daily to help it. I have faith that it will work. You just can't give up, it takes a whole lot of faith. I haven't been able to keep up with my normal lifestyle, but I know one day I will be able to again. Good luck and God bless you all. Stay strong for all of us.
jennifertbby 2 years ago
i have this its horrible and sometimes it will get so bad in my ribs i cant sit up or breathe and its really scary when that happens
atvchick09 2 years ago
i was diagnosted with this in October. Mines gotten way better thanks to physical therapy. i have already had it in both of my legs and one hand. i still have it but its not that bad anymore. but i didnt have crush anyone of my bones, mine just randomly came. it sucks :(
kamrynblanchard1 2 years ago
RSD can and does improve. If you told me that two years ago at the depths of my depression, at the height of the pain, I would have not believed you. But...it can get better. It has for me, allowing me to cut back a bit on the meds.
We must encourage those affected with this to not give up hope.
Bless you all that are dealing with this or support someone that is. From one who has felt the burn, there is nothing else like it. But it does get better. It is possible. Hang on to your hope!
answerstolucky 2 years ago
how :(????? help
divojackson 2 years ago
wow. this is so horrible. i can't imagine what it would be like living with this...
IsThisTourettes 2 years ago
There is more than 1 million of us with RSD. I have lived with it for 5 yrs and a day does not go by without incredible pain.
It is Reflex Sympathetic Dystrophy.
trudythomas777 2 years ago
Did you try physical therapy? It works soo much! I'm only 13 and I had it since this October and my leg would turn literaly black and i couldnt sleep at all. My raumotologist told me to do physical therapy and it works soo good. If your not trying physical therapy i think you should before it gets worse. Good Luck (:
kamrynblanchard1 2 years ago
@kamrynblanchard1 lol your lucky i got this when i was 13 and told the physical therapist about it and he didnt know what it was!!! Im 15 now and still have it
Mr1995superman1995 1 year ago
I wish I could get a dx, it's been 8 years of hell since I crushed my elbow. First told I had Neuropathy, but Neuro's couldn't figure my other symptoms, ice cold skin on fire. Mayo thought RSD, but spread test for months and 4 states away. Tried med schools near, told a nut. Twitches have taken my body. Gave up for a year and just stayed in bed. Lost business, home being foreclosed and no med insurance. It's hell. I don't know, but whatever it is, it will leave me with no choice but to die.
armi555mw 2 years ago
Have you joined any support groups? There are answers for you. I have had RSD for 5 yrs and like you have lost a lot. I belong to many and they really do help with information and where to find resources.
trudythomas777 2 years ago
i was diagnosed about 2 yrs ago. and i know how terrible it feels to be told your crazy and that you are making it up. i joined an RSD support group at my local hospital and it is a great comfort to know you arent alone and that there are those out there who know your pain and can help keep your spirits up.
MartinLuther105 2 years ago
Awesome stuff in regards to a support group at your local hospital!! Sheesh I dunno if any of the staff in my local hospital knows what CRPS/RSD is!! Where you from?
melgus99 2 years ago
Why? why this happens?(
grapehome 2 years ago
Apparently happens in 5% of all injuries where the sympathetic nervous system forgets to switch off once the injury has healed.
melgus99 2 years ago
to those of you that are experiencing this disorder there has been some doctors that have had good success in treating this. chiropractic neurologists are the ones to seek out. not all of them might know how to treat this.
ewidhel1 2 years ago
I to have this disease...and unfortunately theres no cure...thanks for this video. It really helps to show people what I going thru!
NurseHottie4You 2 years ago
i have this
Aveskie09 2 years ago
hi, i'm 14 and got diagnosed with this disease 2 years ago. I would just like to thank you for this video because now I can make people see that I'm not over exaggerating and this pain I am feeling is truly real. Thanks again. Lydia
06lydgib 2 years ago 10
i have it too and im also 14. i was diagnosed july 1st 2009. but have had knee problems for 3 years. and some doctors though it was all in my head and i was faking it. my friends or family didn't believe me. but now its good to see that the word RND/RSD is spreading out so every1 can be familiar with it.
adunkin2014 2 years ago
my brother has this disease...... I hate to watch him when it gets really bad. he is only 13.
otanirisa007 2 years ago
I suffer from this dreadfull, awfull dibilitating disorder. I have suffered for only 2 1/2 years but it feels like a lifetime. Thank you for the video. For the First time I feel like someone out there understands me. It's hard to discribe and try to make others understand what you go through when 99% of them have never heard of it nor your Dr.'s. Thank you for sharing. You have givin me the courage to STOP being silent. For years I have felt ashamed, weak and embarressed by this condition.
tbarnes1000 2 years ago
I am happy this video has helped you. Best wishes Mel
melgus99 2 years ago
i have pain every day all day. think of that . just try to. it is so disturbing..........
footpain2 2 years ago
im 19 and had CRPS since i was 10 thanks to raming a bike seat into my talebone and haveing cancer that weaked the nervers.
i have leaned toblock out the pain and tell the docters it like a hum of a laptop/computer all the time and to my leavel of pain about a 5 ((normal peoples pain leavel: 8))and i get that all the time. and i have to the shock og my docters learned that there is driffent types of pain like theres time of the month pain and endo pain and lot other pain.
melodycass 2 years ago
i was in a bad atv accident and i was diagnosed with this just recently and its horrible it takes ur life away i went from riding my atv and racing to laying in bed in pain....i couldnt handle the pain at school and its so hard to concentrate and im a girl and its so hard to shave my leg that has this awful condition....when i went to the doc last time when i was diagnosed he was touching my ankle leg and foot just rubing it and i couldnt stand it and my rents couldnt watch him do that to me
atvchick09 2 years ago
My friend has this and I have fibromyalgia.....both the beautiful peoples disease. It takes a long time for anyone to understand the depth of this pain. The changes your life goes through when you have it are devastating in all ways.
sturgismom13 2 years ago
I agree with "beautiful peoples disease" :-) So very true for both diseases! Take care
melgus99 2 years ago
Very well put together video. This sounds so much like me. I have had it since Feb 1999. I am on my 5th SCS for treatment. I wish I never heard of CRPS. God Bless everyone and Hope you all have a pain-free night (well has much of one has we can have)
aimeed69 2 years ago
I bulged at disc at L5S1 and it overstimulated the sciatic nerve. I did not get substantive pain meds until I tried to kill myself, and that was 18 months after the onset. All any of the many doctors I saw in the first 3 months had to do was get me a caudal epidural or sympathetic nerve block. This would have calmed the nerve and ended the syndrome. I have been in constant pain for 13 years now. And I have recommended nerve blocks for my mother and my husband with success.
angerdux8 2 years ago
I have CRPS, and it isn't 'just in your head'. Anyone that has the gall to profess that idea is sadly ignorant of nerve diseases. CRPS has several very specific sypmtoms that can be tested and proven with doctors. Its not phycological, its PHYSIOLOGICAL as in physical. its a disease that effects many ppl and doctors have no idea how the nervous system works so they can't fix it. Not undersstood, is NOT the same as not 'real'
RabidPygmy
paws1669 2 years ago
I was diagnosed with RSD in 2001 after a failed back surgery in july 2001. I'm on all the med's, the fentanyl patch, I'm in bed recovering now from a spinal surgery a week ago to have my DCS removed as it no longer worked out for me. I've had it since 2004 and highly recommend it! Medtronics makes it and I would still have it accept one of the leads was sitting on a nerve therefore creating MORE pain. We're NOT crazy, and wouldnt wish this on anyone! The pain is insane!
greeneyez59 2 years ago
how true .i wouldn't wish this on my worst enemy
odinn62 2 years ago
I was diagnosed with RSD in 2001 after a failed back surgery in july 2001. I'm on all the med's, the fentanyl patch, I'm in bed recovering now from a spinal surgery a week ago to have my DCS removed as it no longer worked out for me. I've had it since 2004 and highly recommend it! Medtronics makes it and I would still have it accept one of the leads was sitting on a nerve therefore creating MORE pain. We're NOT crazy, and wouldnt wish this on anyone! The pain is insane!
greeneyez59 2 years ago
My mom and grandmother both have C.R.P.S. (they call it R.S.D.) and i have another nuerological condtion that effects the heart called postural orthostatic tachycardia syndrome (P.O.T.S.) apperently suceptability to nervous system fuckups are genetic
rabidmonkeyjoe 2 years ago
OMG I cried all the way through, my best friends little sister has this
LittleCazzy 2 years ago
ITS NOT ALL IN UR HEAD
My friend had got a shot that nicked a nerve and he had gotten CRPS
DavidArchleta4ever 2 years ago
My Friend has CRPS from a shot that nicked a nerve...
DavidArchleta4ever 2 years ago
ive been diagnosed with RND, RSD, CRPS and im only 13...i cant use bed covers at night, it hurts to ride a car/bus, it hurts to wearr jeans, and i cant run or even walk normally anymore and it sucks!!! im going to the Pittsburgh Childrens Insitiute this week for therapy...any advice?
thanks-Abby
adunkin2014 2 years ago
Yes, My Friends Michael Jared Crawford has been diagnosed with RSD/CRPS..... And he is 12. We Thought he wouldn't make it but Boston is the solution..... they worked him for 2 months only and now he can run.
DavidArchleta4ever 2 years ago
Did Michael get sympathetic nerve blocks? Sometimes PT can restore mobility, but the pain returns. Epiduals given within the first 6months are essential, the sooner the better.
angerdux8 2 years ago
Hi there, I am assuming you mean the one with Cynthia Toussaint (patient). The only docs who say that are those uneducated or ignorant. Thanks anyways.
melgus99 2 years ago
Hello guys, I just saw from Discovery Channel here about RSD , you feel pain but the Dr.'s say its all in your head... I hope it helps. -xoxo-
gingerbread3007 2 years ago
um every single sensation, thing you see or smell is 'in your head' When you have a disease that causes the brain to malfunction and tells you your leg is basically on fire and being stabbed at the same time, it is real. What you just posted is equivilent of telling someone who is blind because of a tumor in their brain is blind because it's 'just in their head' you should be ashamed of yourself
paws1669 2 years ago
i have suffered with crps since 2006 after a work accident and broke both wrists i am still under the pain hospital i have also been told it's in my head how ridiculos! when the pain has disabled me
dikere 2 years ago
i was first diagnosed with this condition almost a year ago after spending 2 and a1/2 years having tests done, being in undiscribable pain, being told it was all in my head. i first got this condition at the age of 12, i am now almost 16 and am constantly in hospitals that dont know what to do. i give them credit though, they try their hardest. this condition is just so unknown and it needs to be taught to everyone. your video discribes this conditioning exactly as it is. thank you =]
miissjessica93 2 years ago
Thank you for this wondeful video. It describes this perfectly. I have had this for about 6 months and the pain just keeps intensifing even with the treatments that have been suggested and preformed. Thank you for placing a video that I can send to my family to give them some kind of idea of what i am going through.
salleesbaby 2 years ago
Comment removed
youeffsee 2 years ago
This video is a wonderful way to articulate the feelings and pain associated with CRPS. I suffer with this illness and appreciate this video so that others can understand what we are experiencing. Thank you.
jlkd2008 2 years ago
As someone with CRPS, thank you. I sent this out to friends and family to help them understand my condition. My CRPS was caused by a severe electrical injury just over a year ago. I went for months without the proper treatment. I hope (know) that things will get better. Your video makes a huge difference! Thank you.
mjacobs745 2 years ago
thank you for this video went i view this i cry i did no know other have crps as well i thought it was me i have crps two years ago it is a demon by it self
9876543211968 2 years ago
My daughter is 12 years of age. Every day she has pain... every evening her feet, shins, thighs, ribs and sometimes arms are riddled with pain and burning sensation. The slightest breeze of fresh air triggers an episode of pain.. my daughter has CRPS and i cant even imagine the pain, my family just watch and try to comfort... but how can we comfort without a cuddle!
thickloaf 2 years ago
hey im 13 and also have this conditition, the best thing i can do is "Power through The Pain" ive been recently diagnosed about 2 moths ago...there is a book on RND/RSD that has a lot info and the author has the condition too. Good Luck with RND
adunkin2014 2 years ago
i have this and have since i was 16 NEVER push through the intense pain because if you do it is proven to cause the pain to spread more quickly. please see a chronic pain specialist. RND and RSD are outdated, what ppl knew of this disease in WW1 when they first 'found' it. you have to use it of course, stretch excersise, but never just 'push' through!
good luck
RabidPygmy
paws1669 2 years ago
Thank You for posting! I first got RSD/CRPS from severe electrocution at three years of age. We were too poor to go to the doctor much less seek out a diagnosis for the bizarre symptoms that followed,at age 25 i under went 5 reconstructive surgeries on my arm/wrist/hand, that set the RSD into a vicious frenzy.Every nerve fiber in my body feels hyper sensitive, even the texture of paper is too much for my fingers to touch sometimes. People Thought I was Crazy. THANK YOU for Posting.
Way2Spirited 2 years ago
Your not crazy, and big hugs for everything you have been through as well!!
melgus99 2 years ago
There is a successful treatment in the U.S for RSD/CRPS and other chronic pain You can go to Google Book Search and read on line the first part of a book about it. This treatment has been used for over 15 years. The book is PAIN BANISHMENT. The doctor has had RSD himself and put himself in remission with his treatment. He understands as no one else can what RSD sufferers are going through. He's been there. This is worth checking out.
dantesnana 2 years ago
Thank you wonderfull vid.
wizardman42 2 years ago
i wuz first 10 when i got RSD and i hated it! thanks for making this video so people can understand
mheisler03 2 years ago
thank you for this awesome video...it says it all. i have rsd in my left foot and like others here have said and the video says it is the worst pain imaginable. let's spread the word about CRPS/RSD and keep raising awareness. we are going to do this...we have to put out the fire. keep praying and let's have hope for a cure for RSD! God bless you all.
Angelgirl712 2 years ago
How do you hep a young girl obtain corporate sponsers for an RSD fundraiser as it th event draws near? It seams that local businesses will try to help but the larger businesses do not respond..
MANFROMMANOMET 2 years ago
Meet them in person to share the story.
melgus99 2 years ago
Wow! All I can say is Thank you for this video, I have RSD and Fibro for 16 years now, and this brought tears to me eyes.
Thank you so much for doing this
Mystique528 2 years ago
I had RSD and i hate how people didnt understand i love this video and am going to use it in my english presentation on my RSD thanks 4 making the video and i am a survivor of RSD becuase of DR.JIM!!! u should try him... every one
55551349 2 years ago
May I please say that there is complete healing available. So much discouragement is in the world today when it comes to being healed by the lord, because so little is seen. My heart goes out to people in this pain, but worse of all, my knowing how they can be healed and not being able to do anything with them. I've seen so many touched by his healing power, that I can not number them. I just pray that the lord would open his will to you, and cause you to be completely healed.
dp6224 2 years ago
@dp6224 I have decided to show your comment. thank you for it. I know some people may be upset if they pray and pray and nothing happens, but it is the will of the Lord and for this people do remember Romans 5:3. .....suffering produces endurance, and endurance produces character and character produces hope. If not in this life you will be pain free in the next eternal one with the Father.
For those not upset, healings do happen just as they did in the bible. Nothing is impossible with God!
melgus99 1 year ago
I am so tired of people not understand the limitations this disease places on a person. Everyone just assumes I choose not to do things, when the reality is that I can't do them. I am so tired of everybody telling me it is in my head...go see a shrink and all will be fixed...I am tired of doctors not understanding and even worse not caring.
pmdd13 2 years ago
I am so glad you put this out there..i have rsd and i have for 4 years now...it is the most agonizing pain in the world, nobody could imagine it unless they felt it themself..thank you again for posting this
kittykatty09 2 years ago
Bless you melgus99. For putting to words, the furstrations, the pains, the blatent insanity one can feel from this and being misunderstood. I wish those who have seen this devil a more peaceful day tomorrow.
Naanad 2 years ago
I wouldn't wish my RSD on my worst enemy.....it has been a year since i got hurt and every day is harder then the last but you got to believe in hope
KissaFishaStudios 2 years ago
when I first saw this, I thought-finally, something to explain my pain to others- now I watch it myself when emotionally overwhelmed w/my RSD-it is healing! I know i'm not alone-but I wish there weren't others living w/this-I have had such emotional pain in life-now I empathize w/all who feel physical pain, too-keep hope-God showed me a glimpse of His pain for our physical pain-I was overwhelmed! He cares for us-enough that He allowed excruciating pain on the cross to save us! Praying for u!
2ufromHim 2 years ago
good job on the video and thes is a message to everyone weth RSD plees dont gev up keep fighting and living one day we thet suffer from things like thes well be fixed and we can live a pain free life i dont hav RSD butt i do understand i hav CEP i can naver feel the warmth of the sun on my face or play out side the suns light is like aside and fire to my skin and eyes. thanks for reading thes tack to you all lader buy buy.
parnmkie 2 years ago