Behind the Mystery of Complex Regional Pain Syndrome (CRPS): A Neuropathic Disorder
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- Опубликовано: 11 сен 2022
- Complex Regional Pain Syndrome (CRPS) is a neuropathic disorder characterized by severe chronic pain, swelling, and hypersensitivity to touch. As a debilitating, orphan disease that is difficult to diagnose and treat, there is a strong unmet need for new, helpful treatment options.
Dr. Amol Soin, Founder and CEO of Soin Therapeutics, joins us to discuss his orphan drug status from the FDA for low-dose Naltrexone to treat complex regional pain syndrome. This is a non-addicting and non-sedating drug that could be a new way to treat complex regional pain syndrome. Low-dose naltrexone is currently being studied in clinical trials, as a step to achieve FDA approval.
We traveled to Dayton, Ohio, to meet Donna, a busy wife and mother whose life was put to a stop when she started experiencing symptoms. After being diagnosed with CRPS, Donna wants to help others manage this often complicated, invisible illness so they feel less alone.
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![[PART 1] Understanding CRPS: The Truth About it’s Neurobiology and Effective Treatments](http://i.ytimg.com/vi/XBB_7MrJkQA/mqdefault.jpg)
We need more focus for CRPS.
I’ve suffered from this illness for five years now and doctors don’t even have treatments for it
Treatment for CRPS is barberic
About a month into my CRPS journey. As a person who also suffers from fibromyalgia, I didn't really think that could be topped in the mysery department. It's been really tough so far so all prayers will be appreciated. I'm only 30 so this is going to be a long haul.
I feel your pain- I am in the sane boat and age range
I understand too. I was finally diagnosed with fibro and lupus, chronic migraines, trigeminal neuralgia and a bunch of other stuff too. Let's see that would have been around 2002, so I was 29. I ended up having to stop working almost 8 years.
I was also t-boned back in April and that set me WAY back to the worst pain that I've had in a long time. Then in September, my upper arm up into shoulder has been so painful by touch, some mild swelling. I thought it was just the fibro until the pain didn't move! I was at pain mgt and she told me it sounded like CRPS and told me to follow up with neuro. Neuro had to look up what it was, so now I'm kinda stuck in limbo. 😢
Sending you both hugs!
Most people with CRPS also have fibro. A famous crps specialist thinks they are the same thing with levels of severity and how it presents. Central sensitivity. Read about it. Sorry you are feeling this exquisite pain. They are also all serious inflammatory autoimmune issues. And related in that way. Covid increases systemic inflammation. I had a huge spread after covid. I wish someone would study that so people can relate more things to covid rather than not see the timeline.
So sorry!!
I’ve had rsd or CRPS for about 6 years
diagnosed before this I thought I just sprained my foot badly for 3 years only when my foot was turning blue and cold as ice but burning like fire I went to a foot doctor who sent me to a rsd doctor I had so many symptoms that I left the rsd office with conformation that it was rsd .Im so glad more about rsd or CRPS is being put out for people who don’t fully understand the hell we go through with this disease thou it drives me crazy when I tell a doctor I’ve got rsd and they say what makes you think that you have it after I tell them all my symptoms they say yea you do and drives me crazy when they asked do I know what rsd or CRPS standards for uggg but I’m happy people are starting to be more educatied about it
Thank you for this. As a CRPS person myself, it is great the word is spreading. I, personally, have it on full right side of body...from toes to fingers. Do wish he touched on the aspects that it can spread also.
Hi Nellie- We did touch on it. Donnas CRPS started in foot and then it spread.
@@carripatrice2924 Nothing new here!
@@sarahlehl6741 You can always produce a video yourself and provide viewers with new information. (You won't do that, of course. Its requires too much effort.)
So what's diffarance than this central sentization
@@sarahlehl6741 When you are going to produce a video that provides new and worthwhile information about CRPS?
Donna did this entirely on her own, and she deserves to be commended. Producing a video of this quality is tough work and Donna did it while struggling with CRPS. Her accomplishment is noteworthy.
You are quick to post a cheeky criticism, but you offer nothing of value to the conversation.
Are you going to produce a video, or do something (anything) to foster a worthwhile conversation about CRPS?
As a suffer myself I find it so hard to deal with the pain. Even with nerve, pain, and spasm medication the pain is still there. It's so hard especially for the hypersensitivity taking a shower is hell and taking a bath is impossible. I have to weigh rather to wear pants or a skirt. Will the wind hurt worse then having the pants touching my skin. I really wish there was a lot more information and awareness for this condition. As it makes it hard to get help especially at the hospital.
As someone also with CRPS that was brought about by a surgery, I'm VERY hesitant to go down the spinal cord stimulator route just because going under the knife caused this in me. I do wish that this video touched on what ketamine has been doing for CRPS patients as well. I was one of the first in my state to have a ketamine infusion for CRPS and it did help for a medium period of time (6 months, opioid free). Yes boosters are necessary but for me, the ketamine worked. The problem, is that ketamine infusions are not covered by insurance for the treatment of CRPS and the method that I had to have my ketamine infusion was in a PACU so it was tens of thousands of dollars for one infusion for me. I hope that in time options such as low dose naltrexone, ketamine and even this new spinal cord stimulator will be available as choices for patients rather than what is currently offered to patients, which is surgery only through a spinal cord stimulator.
Thank you for sharing this. This is interesting information and we are so glad that you got the care that you needed.
He also administers my ketamine infusions:)
Keystone is great. My husband said it saved his life. But boosters are needed.
Thanks for this post, exactly what I said above. Make insurance pay for ketamine. We already have access to very very cheap naltrexone. (Which will get expensive with big pharma involvement and insurance won't cover it, except we can't afford it anymore. Like Spiro clinic, they have good success they say with crps, but private pay only. I'm glad you had the tens of thousands to spend. And glad it helped you.
Couple of things I didn't hear, CRPS is a very personal condition, what works for one person may have no impact on another. There is no one thing that works for everyone with CRPS. Most individuals with CRPS talk about a burning sensation (while it is not just a sensation I can't think of a better word right now), they feel like they are on fire. While that is true there are also individuals you don't hear much about and those individuals have a freezing sensation, with infected areas dropping to 70 degrees. While I understand that the intense unrelenting pain is the major concern with RSD/CRPS, there are also other issues. CRPS can cause anxiety to sky rocket, it can impact your memory. CRPS can effect anywhere nerves go including your thyroid, stomach, etc.
I've been battling this for 23 years now. It's in both feet and legs. Still back on gabapentin, oxycodone and muscle relaxers. I was also diagnosed with Rheumatoid arthritis and fibromyalgia. Heat helps some even had a spinal cord stimulator. Ended up having 5 surgeries on it before they removed it. I would NOT recommend this. I had nothing but trouble with it. And I learned that if I can keep my nerves under control. It has helped keep it from spreading for now anyway. I hope you are doing ok. If you ever need someone to talk to I'm here. Only people with this MONSTER knows the struggle you go through.
I have been a CRPS Warrior for 8 years now. It's been soul crushing. It's so difficult to work thru life as a happy "healthy" woman when I just want to curl up in a ball and cry 95% on the day.
I recently began working with my pain specialist and he has been working with me to try using a psychedelic to assist in turning off the nerve signals and WOW!!!!!! It's been such an INCREDIBLE CHANGE that I'm looking to find ways to become an advocate for the further study of the use of these meds for CRPS/RSD patients!!!!
I'm so happy for you!
Do you mind me asking if it’s ketamine? Ever since I started ketamine infusions they’ve been a definite game changer.
I’m so glad you have something that works for you for some pain relief!!
@@christysmithkraft9252 yes indeed!
I was an early responder so I had instant pain relief but tapers down in time, but I will soak in as much relief as possible in the meantime!!!!
@@donnaartis8517 thank you. It's still a fight. And currently I'm dealing with 2 major nerves in the midst of succumbing to this disease. THAT is harder than the pain sometimes. The grief of the loss of (normal/full) function of a body part.
It’s a shame that the insurances don’t pay for Calmare scrambler therapy! It is a non-invasive, drug and pain free therapy. It changed my life back to normal after having CRPS for over 8 months..
I have CRPS I am in absolute agony
😢
Ive been dealing with this for 13 years and the spina cord stimulator is nothing but a brush it under the carpet situation with a significant risk of problems the docs dont tell you about. The only thing that worked for me ketamine treatment and infusions. I hope this helps
Praying for you & hope you get some relief from your pain! My 29 yr. old daughter got CRPS in the beginning of 2018 from a bunionectomy/base wedge closing in her right foot & it has been a nightmare ever since! She has tried experimental pills, nerve block which she had some kind of allergic reaction to & caused her CRPS to travel up her leg to her hip, she tried a trial spinal stimulator which she also had a bad reaction to & crps started behind her right shoulder & neck & now she has it in both arms as well. The only thing she does now is take gabapentin & percocet, but they will only give her the lowest dose & it barely takes the edge off. She was on a wait list at the Cleve. Clinic (we currently live in Zanesville but from Cleve.)for ketamine infusions but after a year her insurance Caresource stopped covering it. She thinks it's the only thing that might help her,but now you need private insurance or cash & it's thousands of $$$ for treatments. It's just so unbelievable!! She found a hospital in Italy that does the infusions way cheaper than here & she's been emailing them & sending info to see if she qualifies but then we have to figure out how to get to Italy! She never leaves our apt. unless she has an appt. & then can only go depending on weather & how she feels, she's mostly in a wheel chair now, she's in pain almost 24/7. I know what it's like for you because I feel like I also live with it with her every day & I'm also disabled but have to take care of her too. I hope one day there is a cure & it will be available to anyone . People just don't understand how crippling this is,even other family members,they think it's all in her head or she's pretending. Who would ever think something like this would happen from a simple surgery?? Good luck to you!!
I’m so sorry your daughter has CRPS/RSD! From someone that’s had it since 2001, I know what she’s going through! I’m thankful she has you and you understand what she’s going through, it’s an awful, horrible disease and more recognition for it needs to get out there! I just wanted to ask you if she has appealed to her insurance and had her doctors write a letter for her as to the medical need for her? Anything to get her some relief! I haven’t tried ketamine infusions yet but I’m adding it to my list to talk to my doctors about. Can you please tell me what her relief level was before and after she got the infusions? Thank You in advance for any info you can give me! I’m going to be praying for for your daughter and for you, I know it’s hard taking care of someone that hurts all the time! I hate that I can’t be the wife my husband married and he has to be my caregiver 🥺 ~sheryl~ 🙏🙏🙏
16 years of it. from a botched cardiac cath that punctured my femoral art.&nerve at age 24 with congestive heart failure. I had broken 36 bones being an athlete before this...I'd trade all that pain at once to remove the horror of these years; and now? No doctor will prescribe the meds I've been on with no increase for over the past decade, I'm going through forced withdrawal right now and my baseline pain has increased from a 4 to an 8 as my baseline.
I just said a short prayer for Donna. Also, I am hoping and praying that Donna loses weight. CRPS is a nightmarish disease. It takes everything away from us; including friends, independence, money and nearly everything else that is important. Two things CRPS people can still control are food and exercise. I feel so much better when I am exercising regularly and eating better. I guarantee that Donna will feel better if she changes her diet and exercise routine and loses thirty or forty pounds. (I frequently walk in the pool because I am in too much pain to do anything else. I encourage Donna to do the same.)
Don't you think I hate my weight too???? Gabapentin added 80lbs alone! I don't need your pity
@@donnaartis8517 You have the ability to lose the weight. I know you don't believe me, but its true. It would be difficult, though. You would have to change your entire relationship with food and your commitment to exercise. You would have to take accountability for the food that you eat, as well as your daily exercise routine. Gabapentin does not cause weight gain. How do I know? Because I have been 1,800 milligrams a day, for over a year; and I have lost about five pounds. (In reality, you gained weight because you are in terrible pain. Being in pain is the nightmare that never ends. You cope with the pain by eating comforting foods.) Lastly, I never said that I pity you. I don't pity you at all. I said that I would pray for you. I will pray that you find the strength to make healthy changes.
@mike jewpants Gabapentin and Lyrica are linked to insulin resistance in 30% of patients. Insulin resistance causes elevated blood sugar and elevated insulin levels. In short, it's not as simple as calories in / calories out.
@Donna Artis Hang in there! My A1C climbed to 9.3 after years of gabapentin and lyrica. A clever nutritionist did a deep dive into my medications and weight history. She pointed me to a study showing 30% of people on gabapentin and lyrica developed insulin resistance. Elevated blood sugar and high levels of insulin put your system into a state of survival mode. To survive - your body stores energy.
I always wondered why I felt tired after eating. And why I would be hungry again so soon after eating.
It is so much more than calories in/ calories out. The greatest disservice in medicine is the 'eat less/move more' theory. There is zero evidence of this physics approach to nutrition. Hormone levels (like insulin) play a greater role. Take care!
That is my mom you need to shut up because of medications and stuff stop being so fing mean
I had spinal fusion on 4 levels 16 months ago unfortunately it was not a success I now have to walk with 2 crutches because I have lost almost all power in one of my legs my surgen said i have nerve damage in my spine I am in a lot of pain in my back and now develop crps in my leg ,my pain management surgen said he can't do anything for me because the problem is in my back ,prayers to all who are in pain
I agree. The pain I experienced was so out of this world that I remember thinking that had I the means I would have shot myself. I am ashamed to say it since I am a Christian but the pain did not feel compatible with life. It would be impossible to describe it, certainly worse than childbirth and it just went on and on and on. It slowly resolved, the worst of it was the first two years if I remember correctly. The swelling of the limb never left. Mine was from a fracture caused by a bone tumour which needed a knee replacement some 13 years later. Still flare ups.
I use pain pump but would like to get off it
What is the cost plz and where u did it plz help
Yes yes we do father God my prayer is today that you would Open the Eyes of the doctors all doctors in every practice to see that it is not in our heads we suffer daily. And the debilitation is beyond
I have had this disease for a year and have been through all of therapy n shots and even my doctor telling me n my wife I was faking my pain. Almost cost me my marriage and almost my life. I don’t receive any pain meds but do take a lot of the others described in this video , I had to quit my job because just like this woman a breeze to sudden temp change cause fires in the body only the devil should have to endure. I was even passing out if I was kneeling n stood up couple steps n I’d wake up sore from the fall and a couple of times was out for a couple hours. Needless to say I don’t squat down at all now along with lots of daily life chores , like putting on my clothes I can’t tie anything my left hand to me is gone.. it’s swollen my fingers don’t bend unless I max out my tens machine most slap themselves on 6 or 7 I can set to 25 n my hand doesn’t move
I still hope someday i will get some medicine..i just want being a😢 normal again without pain..please
I have CRPS and I spent 10 years in bed 20to23 hours a day now I get ketamine infusions every three months and I’m able to go back to work but if I try to go past the three month threshold, the pain returns
I was diagnosed with Tos/crps. Very depression. I'm fighting with the VA now. Not a candidate for surgery again just back to pt, Chiropractor, continue taking pain meds, pain management and nerve block.
I’ve been suffering from this disease since I had a hysterectomy in 2000 and it’s not getting any better. I have a hospital in appointment in a couple of weeks and hoping that I can get some relief. I was doing quite well until about 6 months ago when I got cut off 2 of my prescription meds and finding it difficult to cope..
I have suffered for 6 years with crps It’s a daily fight
I fractured my ankle in 3 places and I have CRPS . TERRIBLE PAIN 😢
😢
Same surgery caused my CRPS.. night mare illness,, foot turned black inability t eat.. horrible..
I have CRPS after shattering my right leg and ankle. I have had this leg amputated as I had 10 operations on it and they all failed so, amputation was my only option. I also have Fibro and MS. The combination of all three is like living in hell. I have finally found a doctor who listens to me and treats me with dignity. He does not treat me like a drug seeker or like I am faking this. I have been living with CRPS for 11 years now. Because of the Amputation, I am also dealing with phantom pains. I am in bed up to 20 hours a day (on some days) as the pain is so bad. Just for me to get out of my house takes careful planning on both my husband and I's parts. This disease is called "The suicide disease" for a reason. If you do not have CRPS please look up the McGill pain scale.
I gained 150 pounds from the narcotics and inability to move. I lost 177 pounds and it helped reduce the extra symptoms like arthritis and such.
I’ve had CRPS for 11 years ☹️😩💕
Stimulator surgery n a few days! Praying to have the old me back n back to work. Diet is a lot fake food n milk do me no good since this those actually make my symptoms worse .
Canada does nothing, I’ve been in this CRPS, since 2009. I’m so close to taking my life. I’m exhausted it’s hell, I broke my left heel jumping off balcony and my life has been hell since then. All my doctors do is give me the highest amount of opioids but I have to deal with no weight barring. I had two screws go up my heel bone to my leg bone but those two screws cause a huge infection and because nobody listened I went septic and nearly took my life. So the infection ate away all my ankle so they put in a artificial ankle, I’ve had 2 and now no surgeries will help. I have a spinal stimulator. Pain clinic does bandages, I wanted to cut my foot completely off. The spinal also has its own damages. I need a cure fast or the doctors call it the suicidal disease.
I've had the stimulator and they don't work for everyone mine had to be removed. Very painful surgery for no gain
Same here. Have had my SCS for 4 years and am so ready to get it taken out
@@jmoney4442 Yes, they also drain your synovial fluid in your spine and often very poorly constructed. Best to all 🧡
Sadly. Your result is way more common then Dr's, who make a ton of money by performing the SCS surgery like to share. So much data on how risky and proven nit to be successful. Especially after approximately 2 years. Then many have plead to get it removed. Thinking of you. Have you tried Ket-amine infusion therapy or Calmare. Much much higher success rates with higher oercentage of success and way less evasive and risky.
Love you Daughter
Love you too dad!
Anyone viewing this, will have no idea, how bad CRPS ( Complex Regional Pain Syndrome) actually is. My son, was diagnosed, after a surgery on his ankle, went terribly wrong. This women is lucky. CRPS is truly devastating. If you want to highlight this disease, at least interview a person, who's life has been permanently altered. There are too many.
I'm lucky??? Wow 😡
And you have NO idea how my life has been completely flipped! How dare you.
Nobody with this disease is lucky in anyway possible. We ALL have good days and bad..ALL OF US!!! My name is Angel Kimball and was Diagnosed in 2013 CRPS took almost everything I loved away. So don't criticize someone for finding 1 thing good out of this Demon. I found something good too; being able to be home to raise my son!
This woman is not "lucky." That's a very poor choice of words, to put it mildly.
If you think Donna is lucky, you are part of the problem! You have no idea what it took for her to prepare for this interview, or how she might have paid for it afterwards. I do feel for your son but never compare one person’s pain to another. NO ONE WHO HAS CRPS IS LUCKY!
🧡
LD naltrexone made my pain amplified.
I wonder if crps gets better with time
Some MAY go into remission but there is no cure at all.
The answer is no, it gets worse as time goes on . I have have had CRPS for seventeen years.
I do now have a spinal cord stimulator which as reduced the pain by about half . They are not the answer though as they still need a lot of work to make them better.
@@philipcounsell4709 wow! Im so sorry! ☹️
LDN does wonder D 3 levels above 50 It will change your life
If you don’t mind me asking, do you have CRPS/RSD? Also, if you have it, have you done both of these you are mentioning and did they help you? How would you rate your pain prior to and after having them? I have CRPS/RSD since 2001 and no one has ever said anything about D3 levels, I’ve heard of the LDN but my doctors haven’t said anything about trying this but I’ve added both to my list to talk to my doctors about it at next month’s appointment. I’m anxious to hear your reply, thanking you in advance for any help you can offer! Thank You! ~sheryl~
@@callahanianscrapper what's the difference this central sensitisation
If it severe enough nothing works believe me I tried
As usual, this leaves out so many details of having CRPS or what it even is. This doesn’t explain anything. There’s so much more to it and to be heard.
We had 9 minutes.......that of course is not enough time but the goal is to get more awareness and it's happening.
I am sorry that you find this video disappointing. I'm sorry this video fails to include CRPS details that are important to you. I was pleased to learn that you intend to produce a video that is even better. When do you think your video will be ready for viewing?
I have crps have not been able to get relief my life is nothing to what it was I have such bad days that I really just want to end it.
Please don't think there is no hope! We are called warriors for a reason! For us, for others fighting the disease and for those we have lost, we must keep fighting hon🧡
I found a doctor who helped find some relief for me. It doesn't "fix" but ooooooooh wow - taking my daily pain down to mild discomfort has been life changing.
I'm here to answer any questions.
@@mysocalledjourneywithdanie5813 Please tell me more
@@MW-km7vo Ke+am*ne infusions!!!!
Shove your spinal cord stimulator
Ketamine infusions #1
I have had it for 7 years I have had no help. Pain management is a joke pills is all they do
My husband has turned to cheating on me and blaming me for it sad