Is there a cure for Complex Regional Pain Syndrome, CRPS? Joshua Prager, M.D.

Joshua Prager, M.D. is interviewed by CBS News to discuss treatment of three of his patients with complex regional pain syndrome, CRPS. This disease was previously called Reflex Sympathetic Dystrophy, RSD. All three of the patients are considerably better, but not considered cured. Treatments they have received include comprehensive inter disciplinary rehabilitation for pain, spinal cord stimulation, ketamine infusions, and sympathetic nerve blocks. Ketamine infusion treat the patients' pain and can also be used to treat their depression. Dr. Prager credits Dr. Robert Schwartzman with encouraging him to begin using keatmine infusions more than eight years ago.

[@bryanwilliams3524]

5 years of this why isn’t anyone helping us.

[@smoore2422]

I have watched this video 200 times since being diagnosed. It’s the only way I can easily explain what I have to other people. I am like everyone in the video. In a wheelchair now, lost use of my legs, the allodynia- all after a terrible trauma. It took awhile to diagnosis. 8 specialist, 7 MRIs, a feeling like I was overreacting and had zero pain tolerance. I could vividly describe my pain. I finally found this video after searching KZbin for anything to help me understand how my pain pathways were reversed and what had happened to my dopamine receptors and all the science. Great short, visual, factual video. Thank you for doing this story. I needed to see it, share it, watch it again and again. It helped me really process what was going on.

[@beckyhoyt4244]

I'm so sorry for you all. God bless you in a way that you can feel it instantly!

[@bryanwilliams3524]

Thanks Becky. B you made my day. B

[@macintoshimann9892]

Ive been dealing with this undiagnosed for several years now. I don’t know why but it is so hard to get doctors to listen to you even when you’re breaking out in rashes that look like flesh eating bacteria! Because nobody would help me and the only meds anyone offered were antipsychotics I set out to heal myself using neuroplastic principals. I was going to die if I didn’t at this point it was causing dystonia everywhere in my body and causing scary problems with my diaphragm and ribs not playing well together. 4 months ago I could not write or walk unassisted. Couldn’t make a fist, struggling to breathe etc. Yesterday I spent 25 minutes at the gym I drove myself to. I walk in unassisted. Yesterday 2 different people came up to me to compliment my strength while I was training upside down, doing rows with my own bodyweight hanging from a bar. I still have a ways to go, but I have not yet found any part of my body that will not heal! My plan is to keep eradicating the pain with my mind til it’s gone, not giving up til I have my life back!

[@olgamariavillota]

This has defiantly opened my mind to keep pushing on. Been thinking so much on giving up and just wanting to tell the doctors to yank this stimulator out of back. So many why , so many questions saying why do I have this or why of the littlest of things. My life isn't easy and yet at every minute I have to have someone there. Yesterday I almost fell a flight of stairs today I almost fell in the shower. Pain isn't better, I was giving up hope. But I know I got this for a reason thanks to you guys! So many things I need to look into for my health but you guys helped me! Put new perspective into life itself for me

[@angelalall6056]

Dr. Rhodes in Houston, TX has a machine that can cure or put it into remission. I've also heard of HBOT being able to do the same.

[@olgamariavillota]

Don't have the money for it

[@mydogsioux]

Angela please stop using the word cure. NOTHING can cure CRPS. And NO treatment can guarantee remission. It might help some, but there is no "one size fits all" when it comes to CRPS.

[@susancsmith7585]

olga villota I hope this posts, I've never been to this site. I was drawn to this post because I saw mention of stimulator or something & you wanted to rip it out of your back! If it's a neural stimulator implanted in your low back with leeds up the spinal column may I share the same feelings. My bottom line with my experience is that I wish to heck I had never ever been told about a neurostimulator! That was the worst 3 years of my life. I was left with scarring, worse pain than before it was placed & removed. On top of it all, the stim never helped me with my pain. In addition to my intractable pain I have neuropathy. the stim adds vibrations to my body's vibrating, tingling burning sensations already going on. Adding gas to a fire normally doesn't work, for me using the stim didn't either.b

[@janpoole910]

@@susancsmith7585 The shins don't work, I had one 8 years ago. They are trying to treat the nerves but the pain comes from over activation of the Glial cells!

[@danielmouton4952]

I have been battling CRPS for 13 years after a failed double spinal fusion operation on L4-L5/L5-S! in November of 2001. I have two 7 inch titanium rods embedded at the base of my spine. I think the reason why I have the CRPS is because the rods are digging into my sciatic nerve, but I could be wrong. At its worse, the only way I can describe this pain is standing on razor blades in a bucket of fire. The pain started first attacking the lateral side of my left foot and then spread to the entire foot. Over the years the pain has progressively become worse in my right foot. My left foot is about 1 inch larger around than my right foot. I have to take a minimum of 4 different medications daily including oxycodone, methadone, gabapentin, and elavil. On average, I am able to sleep maybe 1 day per week. My life is completely unmanageable because of this pain. I am grateful for my pain management doctor, however I truly despise having to live by relying on taking these horrible medications. I can't think straight and my memory is toasted. Before I got hurt I never had to rely on medication. . I find that during the day the CRPS isn't as bad as during the night. The pain at night is so bad I sometimes think about having my feet amputated. I really think that during the night that CRPS has something to do with poor circulation. Dr. Prager, if you are reading my message, can you please respond and tell me what you think if circulation problems can contribute to worse CRPS symptoms? In closing, for everyone that suffers with this horrible disease, I truly feel for you. I am a Christian and I am completely committed to conquering this disease somehow in Jesus Holy name. For everyone who suffers with this horrible disease, you are in my prayers. May God give you the grace to overcome this horrible disease, because I know how much you suffer. Thanks for reading.

[@bradr1913]

19 years exactly how I feel.

[@blob5907]

cool story bro. Im fine with no pain. I can enjoy everything 😁

[@bradr1913]

I wish some Doctors would realize that crps is killing us with serious pain. I call that at night when you can't sleep "pain somnia " I've spent quite a few nights wanting to die. My crps was caused by surgeons and surgery i did not need. End up with first spine fusion and then bi lateral total tear shoulder rotator cuff. Pain so severe it cause high BP and taka Carta. Went after my heart severe heart attacks. Now an ablation on the heart and pace maker energizes the nerve pain terrible. Im at my ends wit with crps. I often ask why did I ever go to that Doctor to begin with. 1 Doctor for 18 yrs. I have a new one now and we keep trying different meds and treatments very costly and very sick. Vicious disease to live with and even more trying to get my dr. To understand it. I believe its turning around a little bit. Hang in there some good Doctor's are starting to figure this out. Mayo finally came out that crps is a real disease and diagnosed it approximately 3 years ago be patient and pray.

[@jlmsmith2113]

@@bradr1913 Thanks for responding and I am praying for you Brad. I can’t believe I found a comment I wrote 7 years ago.

[@oliviaortiz5157]

For the first time in my life I can relate to any pain or illness, I too have it present in my body/life, but by the GRACE of The All mighty Alfa and Omega my pain was sever in the beginning of my injury, now it has subsided a few notches, unfortunately there is no guarantee that it will not become sever again😢 I am a Christian woman and have giving everything to my Heavenly father to manage and trusting him that I will be avail to bare what's in my future with this condition, All the praise and Glory be to the LORD of Lord's and King of King's Jesus masaih!!! Amen🙏

[@callyouout9302]

living with this is torture...i almost severed my right arm..and was left with this pain for life...

[@Lexilea68]

Bless these people. My CRPS was caught early. I hope to beat it where I can walk and RTW. I'm about to undergo a lumbar sympathetic block and possible Ketamine IV infusion. I take Vitamin C and probiotics as immune health and goot gut health. I underwent a triple phase bone scan which shows degeneration in that extremity. All of this after a fall on November 3, 2019. Bless these people suffering.

[@lovebird1012]

I have had this condition in my left foot since I was 12. I almost lost my big toe as the blood vessels in my foot had shut down which my toe go blue and purple and cold.Even though it burned I had to put a sock over it because kids at school said it was uncomfortable and at one point my teacher forced me to walk down the hall. She called it "tough love", without understanding what my condition was. The only way in can describe it is that it feels like gasoline has been poured on that area and someone has decided to to light it on fire stab it with pins and needles with constant electric shocks. And that is when it is just being touched.

[@Tru1981]

Thank you for making an accurate video. It’s not a cure for this condition. I appreciate the fact that the details are not False. I have RSD/CRPS is my left arm and hand and halfway in my back. It’s extremely painful, there are different treatments for it. I have tried so many things.

[@gregbisesi9966]

ILUVHORSES1981 See my post above. Talk to a representative from one of the companies that help Americans get the Neridronate treatment in Italy. We were told that they will treat people who are beyond CRPS 1. Remission for CRPS 1 is high. If your stage 2 or slightly higher the treatment will help. They don’t guarantee remission but their experience is that the treatment will improve the condition. Good luck and speedy recovery

[@alisonbrown9917]

Hello I think I may have this is it account still active

[@gregbisesi9966]

Alison Brown Have you been diagnosed by a physician? If you have, as the post above you said, Neridronate could be for you. But you need to act, especially if you are in the early stages. Early treatment with Neridronate can put you into remission. My wife has had 2 treatments in Italy a year apart and is practically pain and burning free. We can help you with information and contacts if you’d like to respond to my post. We’ve used two places in Italy. Our local pain clinic doctor administered Pamidronate to my wife. It wasn’t the magic bullet, but it did help my wife get off all her Gabapentin. It’s very affordable. We can give you info on that too Don’t be fooled that this hideous disease is going to go away on its own. It wants to debilitate and kill you with pain and misery. If you haven’t gotten an official diagnosis of CRPS, get it then take advantage of Neridronate if you have the means or seek out a treatment that helps reduce your pain. God bless

[@uscgsarvet6856]

We live in the greater Los Angeles area and I wanted to share my best friend's experience and see if the good doctor had ideas. Late last year, while teaching in her pre-K classroom, a build up of rain and detritus caused the collapse of the ceiling and caused water and gunk to flood a corner of her classroom. Sadly, my friend was evacuating a child into the restroom and as she did so, she slipped. Her left food jammed into the corner of the walls and because she was holding the child, there was torsion. Taken by ambulance to an ER, they did xrays and she was told she just had a sprain. But, everyone around her knew it was more than that. About three weeks after the incident, she begged her boss for a follow up through comp and what no one saw was that her leg had been swollen, black, and blue for over three weeks by that point. The comp doc agreed that there was something more so he asked for an MRI. That took about 2 weeks to get approval. What it showed was a severe tibial plateau fracture, a tear in the ACL, possible PCL and MCL tears and damage to the miniscus. A month later, an orthopedic surgeon wanted to "be conservative" and ordered PT. But, by then, her life was changed beyond repair. She's not had surgery yet to repair the ACL because the pain was preventing progress with mobility in the knee joint. The leg has bizarre symptoms- no hair will grow on it, it turns deep purple, she can't sleep because she says sheets are excrutiating, she has lost muscle tone, her skin on the left leg is almost waxy but large, angry blisters come and go. A pain consult was obtained and the diagnosis was CRPS. Now she's essentially a shut in. She only leaves to go to PT or a doctor's visit. She's having monthly sympathetic nerve blocks that help somewhat but how long can she do that? They only help for a day or two at most and give her just a bit more bend each time but at this rate, I'm worried about her. Her mental health is suffering. If she didn't have children, I'd be on suicide watch because I can see the absolute agony on her face. This was a hiker, rock climber, active mom who took her kids on camp outs alone. She has gained about 45lbs because she can't do anything. She has a car with a manual transmission which makes driving very difficult. What can I do to help her? She wants them to fix the ACL but she's terrified that she'll be unable to tolerate surgery. Her doctor fears the same. How can she live like htat?

[@greeenpro2009]

That's horrendous. Does she have a workers comp attorney? I have had CRPS since 2012. On top of that, I am going through a nightmare scenario where I was hit by a drunk driver as I was working (driving). Horrible accident. Injuries. Worker's Comp. did not want to pay for anything. I had to get a lawyer, and things are still being sorted out a year later. But without the lawyer, the system would have tried to continue to neglect me. Your friend needs a lot of help. I'm not an expert, but I would start there. The ridiculous part about it is that I'm sure she has good health insurance, but it has to be handled through comp because it happened on the clock. Same thing is happening to me.

[@janpoole910]

I've had it 20 years due to a crush injury to both legs and feet. The only thing that helped me was 100 to 150 mcg. Fentanyl patches. I was totally numb! No "high" or euphoria because people in pain cannot become addicted to opioids! Our pain signals neutralize the dopamine. However, the FDA has told all the drug manufacturers to re-formulated and water down their OPIOIDS, so now I have to wear 200 mcg Fentanyl patches DAILY to get the same relief. It's next to impossible to find a Dr. to prescribe that. Check out Dr. Forest Tennant Protocol for Pain (Adhesive Arachnoiditis is just like CRPS). Get OXYTOCIN and Ketamine sublingually. Read it all, it has to do with your hormones, etc. Hope this helps someone! I don't know if Calmare Therapy works, but it costs between $2,000 to $5,000 for 10 sessions. There's a clinic in Riverwoods,Il. Spero Pain Specialist. My pain Dr. wants me to have a Dorsal Root Ganglion Stimulator operation. The sticks don't work because they are trying to treat the nerves and the pain originates in the activation of the Glial cells! I had a STIM operation 8 years ago---Total failure!

[@rihannah07]

I had my appendix out in September 2014, and when I was discharged I thought he'll post surgery pain is very painfull and walking omg it was like my legs didn't know how too. After being told it's all in my head and being sent to psychologists and psychiatrists a pain specialist finally diagnosed me me with CRPS of the abdomen. My hip flexors were affected, my traverse muscles don't work, my lower back muscles don't work, I have a numbness down my backside and sides, my pelvis is always swollen and very tender but what's worst is that I have constant burning in my abdomen but to have strain put on my abdomen muscles that is when the fun starts ... burning that is unbelievably excruciating to say the least will spread throughout my abdomen, pelvis, back, sides, arms, face, eyes, and throat including my insides. it takes me in and out of consciousness and I've experienced what is a living nightmare of pain .. it's not reality because I'm unaware of what's going on around me, I can't concentrate on any one thing, I can't think to safe my life, moving makes the burning worse if it isn't bad enough to start with but you can't stay still either because of the pain. The pain doesn't just come and go either, once it starts it's with me for almost 24hrs, that is a long time to be in excruciating pain and doctors won't give me anything to knock me out :/ As bad as it is for me I am lucky I have some sort of a normal life, just can't do anything so I rest alot excercise very carefully but I've learnt to isolate my abdominal muscles for the most part but still I have to be extremely careful. It's August 2018 now so almost 4 yrs, a no grain, no dairy and no sugar diet has helped with the constant burning but I still have to be very careful with how I move about, even using my arms causes abdominal and back pain. But still as rare as it is to have it in the abdomen there is a diet did help :)

[@lillimccauley7437]

Im 12 and I was recently diagnosed with CRPS. It is such terrible pain daily, and nobody really understands how hard it is :( I've been in a wheelchair for two months, and can barely flatten my foot. The pain is absolutely. excrutiating. I stay hopeful though.

[@Moseslife]

I am a Jamaica 🇯🇲 and I have being living with it for 3 years and still going on with it

[@mcorbin1985]

I just saw Dr. Prager and he was very kind, can't wait to do a trial with him!!

[@sophiejupp1432]

I'm 12 and I have this i only found out today but before today they had been telling me it's all in my head and I done self harm because of it and I have been on crutches for a year now and they only just realized that this is what I have 😥 I'm 12 years old I don't wanna be like this I used to love running and sports everything like that but now I can't even do pe at school and the reason I picked this particular school is because it's a sports collage 😢

[@michellemay7465]

Sophie Jupp , I no what you are going thur believe me .there is a good Doctor in Tampa that can help u out .look up Doctor Kirkpatrick , I'm still dealing with it my self . but if u can get into a heated pool N swim laps as best as u can , during physical therapy will make it worse. that's what dr. Kirkpatrick would tell you and he says water therapy is the best solution to help someone with heart disease,t try that N see if it helps you out but due look him up .N I wish you all the best in getting back to doing some of the stuff u us to due.

[@angelalall6056]

Maybe the Vecttor Therapy System can help.

[@dwaynewright4616]

I'm so sorry for your pain. I am praying for you

[@user-hg5pc2ue7s]

I’m going through right now! Doctors are looking for ketamine infusions for me. I pray I get some relief. I just can’t take this pain anymore 😢

[@GARTHBOOTS]

yes you r so right I have full body rsd it starts at the top of my head into my face,eyes,nose,mouth my entire torso,arms,legs.I have been in so much pain for 14 years.I fight hard everyday.I was in a car accident and have a lot of damage to my entire spine.it feels like all my ribs r broken and my sternum hurts really bad plus the extream burning in those areas makes it so bad.I have no life as hard as I have tried I do have treatments but they help a bit I cant tell you how I pray every single day that there will be a cure soon.I totally understand everyone who suffers the wrathe of this disease.It made it to the no# 1 most painful disease to live with next to cancer.this happened about 3 or 4 years ago.Diseases and control centers.Drs now have to pay attention to us and do there very best to help us.I hope the saying its in your head is gone soon because had I been diagnosed properly along time ago it may have not spread through out my entire body.I hate this disease.lets all pray for a cure soon.I wish you all the best and be well.FIGHT HARD!!

[@angelalall6056]

Dr. Rhodes in Houston, TX has a machine that can cure or put it into remission. I've also heard of HBOT being able to do the same.

[@kevinwofford8024]

Angela Lall the vector machine does not cure CRPS

[@GARTHBOOTS]

yes i know that!!

[@TheDimachaerus]

No, it doesn't. I wouldn't call it a scam, but it's close.

[@angelalall6056]

"Put into remission" might be a better way to say it. (: But it does work for many people. I know some.

[@stephenjoy9002]

hyperbaric oxygen therapy treatment worked for my wife - she is pain and pill free as there is no cure the CRPS can flair again which it did for wife another round of treatment in hyperbaric oxygen and she is pain free again

[@TheDimachaerus]

+Stephen Joy What do you consider a "round" of hyerbaric oxygen? How many treatments?

[@stephenjoy9002]

+TheDimachaerus - in my wifes case it took 35 sessions in 2012 to be pain and pill free, in Dec 2014 the RSD came back quitely and over the next 6 months got unmanageable so another 30 this past fall has taken away the pain and pills again

[@TheDimachaerus]

+Stephen Joy insurance doesn't pay...so that's a ton of money. I'm done fighting. I don't care if I live or die anymore.

[@EvelynEvieFair]

+TheDimachaerus I am with you. I can't live with this pain all the time. I broke my ankle two years ago...two surgeries later and my doctor looks at me like I've lost my mind. I can't even explain to anyone how bad the burning, spasms, and swelling hurts.

[@jenniferwhitehouse8972]

+TheDimachaerus I know someone who uses marijuana to help with the pain, he swears by it. no other medications could help him from opiates and barbituates. this was was the only thing that helped bring down the pain, enough to allow him to operate on a daily basis with just the simplicities of life. unfortunately canabis has a bad stigma attached to it, because of the abusers of its benefits, but it is a medical and natural alternative when used accordingly.

[@livlifeag1902]

CRPS is so awful I am 12 and need walking aids I was very active I did TRACK but now I can’t it has been 3 years

[@sundaysommers1476]

You need to know about the chronic pain focused peripheral nerve surgeon who changed my life. I was crippled for 27 years with CRPS. A simple surgery disconnected the nerve that was causing all my symptoms. I walked the next day painfree. I am now living a normal life without meds. See my video CRPS PAIN GONE AFTER 27 YEARS and another BEATING CRPS, same surgeon.

[@muddintruckinhuntin9036]

Hi where are the videos?

[@sundaysommers1476]

On KZbin

[@bobford9320]

I myself also have crps in my left foot due to heel facture and all the 20+ surgies due to mrsa that i got from a fusion that was done on my foot at UPENN! Thanks Dr.Meha for the hell i go through everyday Having crps is depressing and hurts really bad and there are days i dont want to live anymore but i have children that i love and a wife that traveled with me this whole time that i love That keeps me going everyday. So for anyone that reads this crps is horrible i know I support anyone with crps And i am hear for you if you someone to talk.

[@henry-dn3ks]

kzbin.info/www/bejne/eprWaIF8lMp0ZtU facebook.com/TheNeurologi... share it with other people in the comments so they also know that someone could help them

[@kasaraconnor7531]

I have been diagnosed with CRPS almost 1 year ago in my right foot. I have not been able to get in with pain management so I have had to suffer for the last year. I have confined to a fracture boot due to it for the last year. It has gotten to the point where I just want to cut the foot off and hope that helps.

[@nafgamergirl540]

My whole body hurts! I am 16 I hope if this helps me

[@maureensimpson4383]

My CRPS has spread to 2 new places. Getting an injury now is a much bigger deal. It has become crippling. I can’t work anymore.

[@henry-dn3ks]

kzbin.info/www/bejne/eprWaIF8lMp0ZtU she could help you. facebook.com/TheNeurologi...

[@caricegravot1786]

I have Complex regional pain syndrome and have had it since 1993, was diagnosed under workers comp benefits there was nothing they could do for me at the time and three years later I was finally treated for it thru a the military system as a dependent was sent to a specialist off base under a referral ever since then I have had two spreads of crps one in 2013 due to spinal surgery that spread of crps went to my left leg. The most recent spread of crps is now in my left ankle and foot .this last spread happened early this year in February 2018 after cast removal. To help with my pain I have an scs stimulation system that works for my arm and leg only not for my foot and ankle. I am currently in contact with pain management on contract with medication pain control which at this current time seems to be helping me . We are all out of treatment options at this point. Not sure what to do if this monster gets worse I am scared that this is going to happen I will lose my mobility I don't want that at all.

[@BurtBowers]

I have dealt with this for over year now & scattered place to place & like they said here many docs don't know or even heard of CRPS... I have to deal with swelling of the feet with discolor of the feet, can't even walk right having not much strength & nervousness in both legs having to use the aid of canes or walker, numbness in toes the list goes on I am without the answers other than keep praying for miracle to happen....

[@msfox103able]

I have crps it's so painful in my foot the pain goes up my leg I'm a 27 year old woman people think we r crazy and we are not I wouldn't wish this pain on anyone

[@bandicootcollector]

I was diagnosed with this after a tumour was removed from my foot, but there is no pain to the touch - just in weight bearing and moving.

[@crazymode341]

That's how mine is it's also so cold and strange feeling I call it my dummy foot

[@rianwalters6217]

i have crps and i’m 12... i got it when i was 10! go to lucile packard children’s hospital in stanford! these are the only people who are keeping me on my feet!

[@kristinalopez6466]

Rian Vaughan are you able to go to school regularly? Or do you have a modified schedule? I know someone around your age that I think might have this ..

[@efa2293]

Doctor john brought me here.

[@angeleeclark1628]

My names Angelee I have crps I'm 10 I was at a store when the stabbing started after a while my legs sometimes make it so I can't move them my hospital said I need mental help but we got someone else to check it out and diagnosed me with crps it constantly burns i take gabapenton the only way to make it feel better is to put a heat source on it sometimes it makes rashes and hearts my chest it used to heart my arm but now it doesn't I suffer every day to get up.thanks for reading. 😅😊😌😟😦☹️😒😮☺️😆😁🙃😘😘😍😍😎😚😄😀😚😐😞😠🙄😛😙🤔😡😣🙄😘🙃😆😆😍😜

[@angelalall6056]

Don't know if you will ever see this but Dr. Rhodes in Houston TX has a cure.

[@naomiberris8975]

Hey. You CAN'T be SERIOUS!!! THERE IS NO CURE FOR RSD/CRPS, Causalgia!!! It sure sounds like you're not a victim!!! You've NO clue what this does to each of us who has it. There's many treatment modalities, some works for some while others have no results. There's NO "one fix" for all with a lot of the old "snake oil" out there, too!!!!

[@warrenmcreddie6381]

Mike Richards pharmaceuticals

[@pasadenawheels]

Warren, it appears that you, just like BOTH the FASTEST and the DEA, believe those affected by this horrific disease that everyone "is after drugs, especially the narcotics", which is very far from the truth. If a certain and proven dirt, mud, or similar form of earth were known for relief, no doubt every victim would eat it. Relief of whatever form is what everyone wants, not just drugs because nobody is a drug addict or only seeking drugs.

[@angelalall6056]

Yes, you are right. "Cure" is not the right word, "remission" would be a better term. And, you are right, no modality works for everyone. I'm sorry you are dealing with this. I know what it can do to people. For those who go into remission and don't experience flares again it feels like a cure. But, you are right, I should have used a different word.

[@ChrisGroggyCreaser]

Its the Same with "Chronic Fatigue Syndrome"/Fibromyalgia/ME (Myalgic Encephalomyelitis)!!.... :( - U FEEL MORE TIRED THAN U CAN POSSIBLY IMAGINE!!!... :(

[@jenniferweese9025]

CRPS TYPE 2 is associated with nerve damage. It’s the most painful thing a human can have.

[@18superflo]

Does anyone know of any good support groups for crps? I've had it since 2011. I know it hasn't been super long, but it feels like it's been forever. I can't remember the last time I didnt feel pain. I couldn't tell you how many times I've wanted to take my life just to feel nothing. To go through childhood and not being able to be hugged by my family killed me even more. It hurts to wear clothes, take showers, sleep with sheets. Even the wind hurts. I didnt realize so many people have it and I'm interested in support groups.

[@Peachypooh949]

Im in one on fb, if u havent found one, let me know

[@henry-dn3ks]

kzbin.info/www/bejne/eprWaIF8lMp0ZtU facebook.com/TheNeurologi... share it with other people in the comments so they also know that someone could help them

[@stephanieherron1898]

I had foot surgery and the surgeon severed my sympathetic nerve in my foot. He ruined my life. I had intense pain for four years. I had a neurotransmitter implanted but it didn’t work very well. I was being treated with opioids. I finally decided to go to the pain clinic at Cleveland Clinic and was implanted with another neurotransmitter that had just been approved specifically for CRPS. I also went through an intense pain management program that taught me how to manage my pain. At my first appointment, I was told to quit taking the opioids because they contribute to the pain. I still have bad days. My problem is from my waist down. A moist heating pad seems to help though. I am still very angry at that physician. I should have sued him.

[@stephanieherron1898]

People don’t understand how intense the pain is. It is likened to be worse than cancer. Walk a mile in my shoes before u pass judgment on me.

[@juniperabbott2614]

I hate having this and I hate the meds too They help but i feel sick from them Trying to heal from broken toe in crps foot. Using ointment helps but have to wash it off every morning and that's painful Compression stockings for swelling is even more painful. Don't have money for therapies. Try to eat well, anti inflammation diet, if i eat can't wash dishes. If i do laundry AND shower, can't do anything else and 3 extra meds. If i have to go out more meds. Extreme stress, want to die! ( not in danger it's just the pain) Nobody gets how painful it is. I can't keep up etc. Had a support group but it's gone. Seems my life revolves around managing pain with goal towards managing cause not symptoms but too exhausted and stressed and painful to ever get there. It's a pointless existence and I think about M.A.I.D. a lot. Cry every day and no, antidepressants will not help. Not necessarily depressed it's PAIN. Pain dr just said to keep taking pills if i want to walk. My place is kinda small to use wheelchair etc. On second floor too Nowhere to put or use a scooter definitely! Just got in low income housing a year ago after 10 years on wait list. Thought it was a sprained ankle while moving into new place A lot of Dr negligence too. Wouldn't have fallen if I had PROPER orthotics- ( after 4 surgeries ) podiatrist made 'orthotics ' flat and thin as paper for my sunken , flat , bunion, hammertoe feet. Lost ability to walk proper BEFORE i fell and got crps. Wouldn't have fallen if i had correct orthotics. They see " indian status " = 🤑$$ to them often and not proper help. On disability, had to wait THREE YEARS just for proper orthotics. Round n round n round Now I have to bring a mental health worker with me to EVERY SINGLE APPOINTMENT to make sure Drs don't screw me over more. It works- a bit late now , unfortunately. Yes, I advocated for myself, researched, consulted, but first was in too much pain and stress to do much more than survive n sleep, was depressed eventually ( at that particular point) then pandemic happened etc. If I was someone's beloved pet, they would have kindly euthanized me long ago.

[@danielmanqueros]

I have crps and i went to 3 doctors and they didntt belive me and then i went to a new doctor and they said it was crps

[@ItisSusan]

My 15 yr old daughter has been diagnosed with this. Sadly in Australia there is nothing much they can do. She is now wheel chair bound and the only part of her body that isn't affected is her right arm and right side of her face. This is such a nightmares. No pain relief, nothing. I pray .. it's all I can do for now. I wish someone could help her ... :(

[@henry-dn3ks]

I have seen many people who say that she has helped them a lot with the crps. kzbin.info/www/bejne/pn_Tf6SshriqqNk

[@henry-dn3ks]

kzbin.info/www/bejne/eprWaIF8lMp0ZtU facebook.com/TheNeurologi...

[@imnotsurprised2do]

Get her and yourself into a support group. I had it for 10 years before doing so. Since joining 2 support groups I am learning a lot about methods used around the world. I am beyond sorry she has this thing at her young age.

[@therobnest]

Live with ice packs that’s me!

[@reganparker4986]

I got diagnosed with it in my left ankle and I’m only 13

[@alzenlizard]

Normally, GPs prescribe Gabapentin for CRPS

[@shawnatyrrell8709]

My daughter has had since she was 10. Horrific

[@creative1derkingdom353]

For people with this disease there are PRP and Stem Cell successes out there and they are making breakthroughs. You might want to check into it.

[@anthondeutsch3133]

Ice packs are the worse thing you can do. It seems to make it better but it does not. Blood will not circulate well. Secondly CRPS/RSD is not a women’s disease. I have 90 percent of my body covered with it from my eyes to my toes. When you have pain ad your feet or hands become stiff you have to force them and practice moving them even if it hurts. If nobody had told me this my hand and feet would be completely lost and without function.

[@mrutledge122]

im a male with crps

[@bradr1913]

19 years I've lived with it. C-spine injury and bilateral rotators in shoulder. Never recovered. Came close to calling it quits. In a drug trial for 7months now. That almost got me at the end. It ate my heart. Major league takkacardia. Had heart ablation and a pace maker killing me. Thing sends out vicious nerve pain on left side. Outta control bp with that severe pain swelling and sweating. I just want it to end. Someone needs to wake these dr. Up. For 10 years I've tried to tell them and they need education. Now I'm really pissed and if the dr. Doesn't listen to you. Go tell you find one thats a real dr. Maybe they'll find a cure hope so.

[@bradr1913]

@Mikayla westwood even with a trapped peripheral nerve trapped under a shoulder blade.

[@angeleeclark1628]

I have cprs I'm 10 years old

[@sarahdudley4197]

OHHH NO PRECIOUS,I'M SOOOO SORRY. COME JOIN US @ THE "CRPS/RSDFIGHTERS DARLING. ANOTHER GROUP COPIED OUR NAME,,,,WE HAVE COLOURFUL "WINGS AS COVER PHOTO" NOT BROWN WITH A SHEILD WITH WARRIORS WRITTEN ON BROWN BACKGROUND. ASK YOUR PARENTS/GUARDIANS 1ST THOUGH! WE HAVE AN 11 YR OLD,A 14 YR OLD AND A JUST TURBED 18. WE WORK HARD FOR WHAT WE CALL A FAMILY. WE HAVE MANY FILES,EXPERIENCED ADMINS AND MEMBERS. WE ALLOW PARENTS.SIBLINGS,CAREGIVER ETC ETC TO ALSO JOIN SO THEY CAN CARE FOR SUFFERERS BETTER AS UNDERSTANDING CRPS IS VERY VERY IMPORTANT. ALL MY LOVE SWEETIE,XXXXXXXXX

[@kbenson790]

😢this is such a debilitating illness.

[@bryanwilliams3524]

My god I’m not alone. B

[@Me_chelle93]

I have CRPS, I was VERY lucky with my diagnosis, my family doctor knew exactly what was wrong with me! He called it RSD first. My only problem is NO ONE WILL HELP ME! I was diagnosed in 2017. The pain doctor I was seeing was arrested for Medicare Fraud. No one will pick up my old prescription. I'm dying seriously. Mine is in my Left Thigh and now is affecting my lower left leg, my bowels and bladder.

[@mikemoye4460]

None of these "remedies" have helped me and I've had crps for 3 years and I'm 11

[@henry-dn3ks]

facebook.com/TheNeurologi... kzbin.info/www/bejne/eprWaIF8lMp0ZtU

[@suzzanyebeck3908]

i am a kid and have rsd but not this bad but close

[@dorenehendricks6627]

I have had RSD FOR 17 YEARS IT CONTROLS U. U DO NOT CONTROL IT JUST LONG FOR A PAINFUL RIDE

[@rachels1616]

I have CRPS thru out my body

[@rachels1616]

@Mikayla westwood Thankyou and next month I am scheduled for a spinal implant, stim unit

[@Pankajthedholi]

Hi Joshua, My gf have the CRPS from last 6 years after an injury from football. Her right arm get swallowed and it takes 3-6 days to get it better. I am taking her to different different doctors but nobody know what to do. They gave her gabapentin for 2 years. Now they want to try mirror thearpy. Could you please tell me what should we do. Anything will be helpful.

[@angelalall6056]

Dr. Rhodes in Houston, TX has a machine that can cure or put it into remission. I've also heard of HBOT being able to do the same.

[@raybeesmustsuck]

20-40? try 15 years old. my little sister was on 15 when she got it. it has ruined her life with NO help from doctors.

[@janesmith4167]

RachelRantsTooMuch no one is fighting abt. who has it the worse. rsd sucks. period.

[@angelalall6056]

Maybe you could look up Vecttor Therapy system

[@Rain11Eleven]

Im 29 been dealing with this for 3 to 5 years ....spinal cord stimulator kinda helps nothing solves it.this will help you waist time.

[@hermanherman5834]

This shit ain't fun. Even a mild case is bad. Physical therapy is the only thing that helped me.

[@jackieerskine3102]

Please let me die.

[@lynn.d1015]

Where are these doctors and how do I get a appt?

[@imnotsurprised2do]

Dr Prager is in CA. I think it said UCLA. A lady in my support group sees him. She said he is great. I belong to RSD SISTERS and CRPS AWARENESS. These are both informative support groups.

[@abriel6412]

I'm flaring as I watch

[@marcusaurelius2242]

This is not a mystery disease.

[@mathieuvallerand6772]

Please explain further.

[@scotteranger4524]

@@mathieuvallerand6772 Well...CRPS is basically dysfunction of the Central Nervous System. It can be caused by a myriad of issues. basically, when you're in pain for a prolonged period of time the pain becomes "Centrally Sensitized," meaning it is part of the brain and spinal cord. You become stuck in a pain loop. Once the CNS becomes damaged, then thee cascade of symptoms will arrive. The ONLY thing I have ever witnessed with my own eyes reverse these symptoms is the Spero Clinic, in Fayetteville Arkansas.

[@1999straker]

my CRPS has been caused by lots of spinal surgery and ALIF that's a fusion a nasty operation in itself .i am in the uk and at the end of rope with intractable PAIN .i am on decent painkillers but need lots of them because without them the pain is too much i feel for anyone with the awful illness

[@michellemay7465]

Hi Tony beer, I hope u get some one to help u out there is a Doctor in the USA that is from Tampa FL .look him up and see if u can get him to help u.I go to him and he No's his stuff when it comes to this disease that we have that's called RSD/CRPS1 . believe me I know what you are going thur.. with are body's feeling like we are on fire to feeling so cold ,to feeling like u are get stub's in the area u are hurt in.the acting,cramps you get to your body part either being hot red N purple to not being able to walk or sleep N I could go on N on .

[@TheDimachaerus]

Dr. Hannah?

[@awtocute]

I'm a 18 year old with crps nd in direct need of help I was taken out of high school due to this disease I was diagnosed with this Feb 4 2013 nd right now I have no doctor or anything and it's in my both my arms and both my legs I need help and will take any suggestions someone please help me

[@stegar54]

I'm sorry to hear about your pain. Just know that stress makes it worse, and if you try a certain diet it can make it better.

[@awtocute]

Ok thank you

[@stegar54]

+Mia woods Are you doing any therapy, and do you have a doctor right now?

[@stegar54]

+Mia woods Are you doing any therapy, and do you have a doctor right now?

[@stegar54]

+Mia woods Are you doing any therapy, and do you have a doctor right now?

[@jasonheal6633]

Crps is a curse from GOD I had it for 15 years since I was 18 I'm now 33

[@oliviaortiz5157]

God almighty doesn't curse!!! If you knew that he sent his only begotten son to die on Calvary for your sins and mine, you would know it's not him that sent it !!! 🙏😢 Instead repent from your sins and ask for mercy, THROUGH Jesus Christ who will strengthen you to bare all thing!!!🙏

[@sharyonlowery]

My husband has CRPS and this cream called neuropathy maximum strength help take away most of his pain. You can buy it on Amazon for $25 and it's in a purple and white jar. It's natural and it's the only thing that help him. The gabapentin did nothing for him. Hope this helps, have a blessed day ❣️.

[@dorenehendricks6627]

No there is no cure yet I was told 15 years ago by the time I'm 80 or so just maybe I'm 65 now

[@Pakuja1]

😭😔😔

[@jerrylarson8169]

has anybody here tried hypnosis?