Behind the Mystery of Complex Regional Pain Syndrome (CRPS): A Neuropathic Disorder

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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[sicknarty]

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.

[nellienaibert]

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.

[mysocalledjourneywithdanie]

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 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!!!!

[ladyhollywarren]

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

[loriewillis]

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.

[burningisis]

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.

[isabellabier]

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..

[angelaschofield]

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.

[ikamtoo]

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

[TheNeonNinja]

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.

[vickiwaatti]

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.

[caterpillargirl]

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!!

[johnfallon]

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

[Witten]

I use pain pump but would like to get off it

[darrellboren]

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

[JoelBillman]

I have crps plus a spinal cord injury. I fell 70 feet hiking and crashed down through clifts, trees and brush. I was instantly paralyzed. I got crps from the 10 hour surgeries. I went undiagnosed for 7 years. Having crps with paraplega is the worst combo ever because of all the secondary conditions. I've had over 60 utis and uti once went to sepsis. I've had ulcerative colitis and c diff infection. Chronic hypersensitive and hypertonic muscles. Scoliosis on spine causes migraine. I stopped opiates like 7 years ago and pushed through the strongest pain without anything besides cbd, never been approved for nerve block or any treatment. Had a 3 day ketamine infusion that gave me diarrhea, vomiting and spasm seizure-- where I lost control of my body, knocked over everything near, and was almost sent to e.r. . So not sure of ketamine helped since I was in such bad health at the time. Basically doctors have sucked so I battle it alone. I don't know why I've survived 11 years when most people commit suicide by year5

[lontho]

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.

[delphinium]

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.

[BWhite-tbir]

It took me 16 years to get diagnosed.
Spread full body with organ involvement.
Of course insurance doesn't cover needed treatment.
I have tried LDN, and it did not work. I am not a candidate fir a SCS. Ketamine infusions and lidocaine infusions help. But like most CRPS patients, I have to pay out of pocket for ketamine infusions.
It is known as the most painful condition known to man for a reason and it sucks having it impact organs as well.

[amyterrell]

I also have this disease since 2016 first started after my two carpal tunnel surgeries. Its only got worse it has spread from my hands to my arms to shoulders and now my legs feet