Well done Susan and Drew, what a fabulous interview and story. I've worked as a chronic pain nurse for 25 years and this is a video I will recommend to my patients. All our team love modern pain science and it's not often acceptable to others in the medical profession. Thank you.
This is just wonderful information I’m new at this but I’m not new at chronic pain. I developed a typical trigeminal neuralgia they also call it type to trigeminal neuralgia after dental surgery on my bone. I was already sick with chronic fatigue syndrome fibromyalgia and interstitial cystitis so upset about it because it was so painful and now I know when you’re that sick you shouldn’t be having this type of surgery which is just optional he claims it would make all my illnesses go away. He said you will be in chronic pain forever you’re the One in 1 million who gets this. Of course support groups just showed me a lot of people crying I talked to them no one was better I did what I did to get over interstitial cystitis after a decade of pain, also nerve pain couldn’t sit etc. and I just started ignoring everything got off the groups tried to deny it but didn’t work. So here I am,Way too late because I refuse to Google any medical conditions cause I knew that’s what made my all of my other stuff worse little did I know all this great info was out there. One doctor told me I just called trigeminal neuralgia reflect sympathetic dystrophy which is not what they called CRPS and he was right it’s the exact same thing just in a different part of the body. Thank you for posting this gives me a lot of hope. I’m so excited for her she is just awesome bravo, 👏👏👏👏👏💙💛💙💛💙 I too was given cues by my body, back pain, chronic fatigue syndrome of flu that lasted forever, fibromyalgia but I kept going working long hours in a stressful environment that I didn’t enjoy but I made good money until my body Made things worse and my body took me out of the game 100% I was devastated. She can’t be president of the professional control club, because I am! Glad to see if she took her power back don’t give your power up the Regular doctors.
Susan is an inspiration for all us inflicted with CRPS/RSD. Her amazing Facebook group was hands down the duo (the group and my PT) helped my recovery. I'm not in remission but I can do things because of the things I learned from Susan.
This is a very similar story to mine. I’ve had crps since 1986. I had a failed sympathectomy which spread the CRPS. I survived in misery until 2010 when I discovered neuroplasticity & invented exercises for myself. It was successful & I was able to stop high doses of fentanyl, Norco & 5 other pain meds. I now live a pain -free life & I’m currently authoring a pain management book that combines neuroplasticity & lifestyle medicine.
Thank you so much, keep spreading the word Susan, I recognized myself in your story. About you being a perfectionist it can wear you out.Thank you Thank you Thank you❤️
The most frustrating thing for me now that I’m recovering is trying to talk to doctors who prefer to be ignorant. Even once I started reporting return of function after several months of high dose THC they started prescribing antipsychotics I didn’t want for my “marijuana addiction.” Quacks every one of them. Ive had such a hard time with this illness and im committed to making a full recovery so I can help others.
@@Truerealism747 was certain it must be CRPS when I wrote this but I’m honestly still just guessing. Became neurologically sick following a car accident and nobody thought it was worth treating. Saw 12+ docs all had different diagnoses. Whatever it was caused tremors in my head, neck, shoulders and trapezius muscles while the skin turned red and ripped open in some places. Looked like shingles after 3 years of my nerves burning away. Symptoms increased until an ambulance took me to the hospital for seizures. Only I don’t have seizures. But wasn’t able to communicate that. Lost normal consciousness for 48 hours regained it in the ICU. I spent a week getting worse in the hospital and then they sent me home still on the decline. Told me to work with my doc only I don’t think he understood what happened at all and totally misunderstood the breathing problems I was having. My doc tried to treat it with psych meds and told me to go to therapy. Dystonia radiated from the places that scarred over and caused horrible damage to my spine as I became so weak I couldn’t hold my head up. I’m suspicious the symptoms are a result of undiagnosed and untreated CRPS. Now I’m treating it like you would a spinal injury and my brain like it has a TBI and finally seeing success this year learning to walk and hold my head up again. Even learned to breathe without pain again. I’m indeed recovering from the dystonia which makes me believe their had to be something else like CRPS causing it. Or maybe you can actually get over dystonia it’s so hard for me to say. All I really know for sure is I’ll never leave my healthcare in the hands of doctors again. Just glad our bodies know how to heal this crazy stuff
@@brandonr7126 yep. At least 1-2 grams of flower every day. Big oral doses when my wallet could afford it. Used other cannabinoids like CBD and CBG as well. I literally had a phone number for a lady with good hemp in town lol
Everything that this lady says makes so much sense to me.Ihave crps 1 brought on by a wrist fracture.I have managed not to take strong medication,had a lot of physio that's all.Its spread to my legs,and I suffer with tinnitus and vertigo.But it is all about retraining your brain I am sure.Your an inspiration .Thank-you.
Me too!! Bullet partially severed Perennial Nerve left leg almost 30 years ago. Fighting with VA HOSPITAL over med dosage again. Tried holistic approach and it failed too. When the pain people overrule primary care and restore my meds I can walk, talk and crawl on my belly (lol) again. I'm in process of suing VA. Opioids worked for me with no signs of addiction.
I've had it though in my backside since 1997 now it's more fybromyalgia everyday though I've found out I have Asperger's after decades and add thus is why my subconscious brain is doing it my mum had severe ms surely had Asperger's to
@@Truerealism747Hi I’m responding to a response you wrote to a mind-body interview with a woman who had CRPS. I’m curious how you were diagnosed with Asperger’s. It seems a lot of people are being diagnosed on the spectrum when they had no idea I find this interesting.
During the first COVID lockdown my brain stopped working and I’ve been trying to rehab myself since. Nobody understands what I’m dealing with and I’ve been trying to find that one person who’s got my back and get me to the other side….I would literally move anywhere in the world…are you out there because I am a warrior waiting for a teacher?
Enjoyed the listen. Diagnosed with CRPS recently after an ankle fracture summer 2023. Apparently all healed but pain continues and into the uninjured foot. Do these books share specifics on brain retraining?
I can't do Facebook and I'm trying to list Susan's mindfulness tools. I got DRNS, Dr Mosely, Alan Gordon, Pathways Pain Relief but she mentions Dr Shelbner(sp?), Rachel Zofnes(sp?)
Well done Susan and Drew, what a fabulous interview and story. I've worked as a chronic pain nurse for 25 years and this is a video I will recommend to my patients. All our team love modern pain science and it's not often acceptable to others in the medical profession. Thank you.
Reason why they be out of a job
This is just wonderful information I’m new at this but I’m not new at chronic pain. I developed a typical trigeminal neuralgia they also call it type to trigeminal neuralgia after dental surgery on my bone. I was already sick with chronic fatigue syndrome fibromyalgia and interstitial cystitis so upset about it because it was so painful and now I know when you’re that sick you shouldn’t be having this type of surgery which is just optional he claims it would make all my illnesses go away. He said you will be in chronic pain forever you’re the One in 1 million who gets this. Of course support groups just showed me a lot of people crying I talked to them no one was better I did what I did to get over interstitial cystitis after a decade of pain, also nerve pain couldn’t sit etc. and I just started ignoring everything got off the groups tried to deny it but didn’t work. So here I am,Way too late because I refuse to Google any medical conditions cause I knew that’s what made my all of my other stuff worse little did I know all this great info was out there. One doctor told me I just called trigeminal neuralgia reflect sympathetic dystrophy which is not what they called CRPS and he was right it’s the exact same thing just in a different part of the body. Thank you for posting this gives me a lot of hope. I’m so excited for her she is just awesome bravo, 👏👏👏👏👏💙💛💙💛💙 I too was given cues by my body, back pain, chronic fatigue syndrome of flu that lasted forever, fibromyalgia but I kept going working long hours in a stressful environment that I didn’t enjoy but I made good money until my body Made things worse and my body took me out of the game 100% I was devastated.
She can’t be president of the professional control club, because I am! Glad to see if she took her power back don’t give your power up the Regular doctors.
Susan is an inspiration for all us inflicted with CRPS/RSD. Her amazing Facebook group was hands down the duo (the group and my PT) helped my recovery. I'm not in remission but I can do things because of the things I learned from Susan.
Susan and her fb group helped me move again. Grateful for these angels!
Susan started me on my mindbody journey and I am so proud to see and hear her share her story
Susan’s an inspiration for everyone!
True
You both are an inspiration, Susan & Drew, l want to improve too, energy is difficult, but try l will. Thank you both for this video.
This is nothing short of completely inspiring!!! Thank you for doing this video!!
You are so welcome!
This is a very similar story to mine. I’ve had crps since 1986. I had a failed sympathectomy which spread the CRPS. I survived in misery until 2010 when I discovered neuroplasticity & invented exercises for myself. It was successful & I was able to stop high doses of fentanyl, Norco & 5 other pain meds. I now live a pain -free life & I’m currently authoring a pain management book that combines neuroplasticity & lifestyle medicine.
Thank you so much, keep spreading the word Susan, I recognized myself in your story. About you being a perfectionist it can wear you out.Thank you Thank you Thank you❤️
The most frustrating thing for me now that I’m recovering is trying to talk to doctors who prefer to be ignorant. Even once I started reporting return of function after several months of high dose THC they started prescribing antipsychotics I didn’t want for my “marijuana addiction.” Quacks every one of them.
Ive had such a hard time with this illness and im committed to making a full recovery so I can help others.
What are you recovering from
@@Truerealism747 was certain it must be CRPS when I wrote this but I’m honestly still just guessing. Became neurologically sick following a car accident and nobody thought it was worth treating. Saw 12+ docs all had different diagnoses. Whatever it was caused tremors in my head, neck, shoulders and trapezius muscles while the skin turned red and ripped open in some places. Looked like shingles after 3 years of my nerves burning away. Symptoms increased until an ambulance took me to the hospital for seizures. Only I don’t have seizures. But wasn’t able to communicate that. Lost normal consciousness for 48 hours regained it in the ICU.
I spent a week getting worse in the hospital and then they sent me home still on the decline. Told me to work with my doc only I don’t think he understood what happened at all and totally misunderstood the breathing problems I was having. My doc tried to treat it with psych meds and told me to go to therapy. Dystonia radiated from the places that scarred over and caused horrible damage to my spine as I became so weak I couldn’t hold my head up. I’m suspicious the symptoms are a result of undiagnosed and untreated CRPS.
Now I’m treating it like you would a spinal injury and my brain like it has a TBI and finally seeing success this year learning to walk and hold my head up again. Even learned to breathe without pain again. I’m indeed recovering from the dystonia which makes me believe their had to be something else like CRPS causing it. Or maybe you can actually get over dystonia it’s so hard for me to say.
All I really know for sure is I’ll never leave my healthcare in the hands of doctors again. Just glad our bodies know how to heal this crazy stuff
What do you consider high dose THC? like hundreds of milligrams per day?
@@brandonr7126 yep. At least 1-2 grams of flower every day. Big oral doses when my wallet could afford it. Used other cannabinoids like CBD and CBG as well. I literally had a phone number for a lady with good hemp in town lol
Thank you for sharing your story...thank you so much.
Everything that this lady says makes so much sense to me.Ihave crps 1 brought on by a wrist fracture.I have managed not to take strong medication,had a lot of physio that's all.Its spread to my legs,and I suffer with tinnitus and vertigo.But it is all about retraining your brain I am sure.Your an inspiration .Thank-you.
What an inspiration.Susan Drew your both amazingxx
Thank u Susan an drew amazing story
So inspiring to me. Thank you.
You are so welcome!
Me too!!
Bullet partially severed Perennial Nerve left leg almost 30 years ago.
Fighting with VA HOSPITAL over med dosage again. Tried holistic approach and it failed too.
When the pain people overrule primary care and restore my meds I can walk, talk and crawl on my belly (lol) again.
I'm in process of suing VA. Opioids worked for me with no signs of addiction.
I'm new with CRPS, it's a nightmare I feel that's forever
I've had it though in my backside since 1997 now it's more fybromyalgia everyday though I've found out I have Asperger's after decades and add thus is why my subconscious brain is doing it my mum had severe ms surely had Asperger's to
@@Truerealism747Hi I’m responding to a response you wrote to a mind-body interview with a woman who had CRPS. I’m curious how you were diagnosed with Asperger’s. It seems a lot of people are being diagnosed on the spectrum when they had no idea I find this interesting.
During the first COVID lockdown my brain stopped working and I’ve been trying to rehab myself since. Nobody understands what I’m dealing with and I’ve been trying to find that one person who’s got my back and get me to the other side….I would literally move anywhere in the world…are you out there because I am a warrior waiting for a teacher?
Ps - feldenkrais works but also scares me when I’m alone
@@thewaterprophet6880 in what way
Enjoyed the listen. Diagnosed with CRPS recently after an ankle fracture summer 2023. Apparently all healed but pain continues and into the uninjured foot. Do these books share specifics on brain retraining?
Yes and they point to novel interventions for recovery.
Did the PT help more or just the brain retraining in your opinion ?
Rude, we're all adults andwill only buy a book of we want todo bugger off. He's helped me a lot... what Gabe you done
What is Susan’s last name to search her on social media
Susan Hallock Smith
I can't do Facebook and I'm trying to list Susan's mindfulness tools. I got DRNS, Dr Mosely, Alan Gordon, Pathways Pain Relief but she mentions Dr Shelbner(sp?), Rachel Zofnes(sp?)
Dr. Schubiner (Unlearn Your Pain)
Is this EMDR you were doing ?
No. There is a wide range of therapeutic techniques for helping persistent pain. Look up Curable to get an idea of this kind of work.
What is Susan's FB group called please?
It’s in the video description 👍🏻
What is the name of the doctor she just found?
What is the title of Dr Somners book?
Do you recall when Susan mentioned it?
@@thepainhabit8343 No
Dr. Schubiner ...."Unlearn Your Pain"
@@rlabarbera has it worked for you
How long was this survivor remitted for?
Not my patient. Just someone sharing an authentic story of recovery for those open to hearing it 😀
Sorry kinda hard to believe I have had RSD/ Crps for 20 years my is so aggressive there is no cure but to each there own just sayin
Great collaboration on trying to scam people to buy your book