Elementary: Unlocking the Mystery of CRPS with Dr. Philip Getson, DO - RSDSA

[@BBEEAATTNNGGUU]

6 years since the shooting, and my doctors still argue about my CRPS while it just gets worse. I'm 35. Imagining 35 more years of this gets heavy. I can't thank you enough for these videos!!!

[@Christinesobsevations]

Yep that’s what they all do As we suffer .

[@bees5461]

Hang in there. I have had this condition for 24 years. It took me 8 months to find a pain management doctor that believed my story. I had a hip replacement that seemed to go perfectly well. The hip joint works perfectly. But I had severe pain that just continued for month after month after month and now, years. So, the eighth month I had a doctor that was going to do a sympathetic nerve block. I was laying face down on the table and he accidentally touched the area of the hip where the incision was made. I came off the table screaming. And my reaction to his very light touch finally convinced a doctor that yes, SOMETHING was wrong. He as able to try different treatments to help me get at least a reasonable amount of pain relief, but it took 5 years to get an actual diagnosis. In those days even pain management doctors for the most part had never heard of this condition. I wish you the very best and I truly hope you are getting adequate pain relief. This is a cruel condition. Take care, friend.

[@Moriah7913]

I developed most of these symptoms after fracturing my ankle and have been dealing with chronic pain from 3 - 10 for over a year since the injury. It's frustrating that I was dismissed so often when I brought up the possibility of this being a "nerve issue " by 2 different specialists for several months. Finally in the last week, my podiatrist admitted she believes that I have CRPS. I'm so happy I found this lecture so I know which treatment options to avoid and what I can do to help myself and advocate for myself more when in the doctor's office.

[@rachelsantilli1755]

Pretty hard pill to swallow that this lecture was in my hometown where I've suffered without a correct diagnosis until I made it myself a week ago for 15 years. And none of my dozens of doctors could tell me about this lecture. I'd have been there. I'd like to see the guest list so I can check out one of the local Houston doctors in attendance and perhaps they'll understand CRPS, allodynia, hyperalgesia or me somewhat.

[@genericamerican7574]

🫶I hope you’re better this year.🎭🕊️ I got diagnosed by a team of interventional specialists while in the hospital after an eight inch spinal tumor was removed and I had MRSA in my spinal fluid because of surgery. Every single doctor including a CRPS specialist at UCLA gaslit that couldn’t be in pain from surgery that happened in “08”. 99% Doctors don’t want to treat anything serious. They can’t admit that anything is wrong because they hate the paperwork. That’s my opinion from personal experience. This guy is 1%. Notice him say doctors don’t want to diagnose it even when they know what it is.

[@Christinesobsevations]

@@genericamerican7574it’s the TRUTH . Period !!!! 100 % nobody wants to deal with me . ER docs don’t mind because they don’t know me . I’m So lost and falling through the cracks .

[@Christinesobsevations]

@@genericamerican7574he truly is on the 1% I’d give anything to have him & Dr chopra . Both out of my reach due to cost My Dr that diagnosed me said go see dr chopra sure are you paying 😂 Wish I had it like that I’d be in better spirits if not remission by now

[@catelewis7223]

It’s a tough journey. I’m hoping a ketamine treatment tomorrow is the start of some relief. My god CRPS is awful !

[@genericamerican7574]

@@catelewis7223 good luck with that🍀 If it wasn’t so expensive I would try the same. If you have time after your treatment I would love to hear that you start feeling better. 🤞🖖✌️

[@firsty8056]

Only 6 minutes in and already provided more answers than 4 years of specialists! I was walking to work and felt a snapping sensation just below my right knee, uncomfortable but not painful. By the end of the day the sole of my foot felt like i had stood on lava and has been that way since ruining my quality of life and preventing me doing things with my kids. Rather than accept that as the cause of my pain, a neurologist diagnosed FND because an exgirlfriend from over a decade ago used to throw stuff at me in anger and that "emotional trauma" is supposedly the cause of my pain and it's "all in my head". I came across CRPS as a condition when looking into amputation as i tried to remove my own toe due to being sick of the pain and my frustration with healthcare professionals. Looking forward to the rest of the video to see what else i can learn. Thank you.

[@janicetelfer6211]

What an incredible doctor. I can feel the compassion you have for people with CRPS. This has given me a new outlook on my diagnosis. Thank you

[@plato4414]

I'm amazed as my practitioners, in Chicago, basically say life is over, deal with it, no treatment; no cure! Thank you Dr. G....I will be emailing you soon and thank you for allowing this...P.S. I'm a medical practitioner...😵🤯🤞🏼

[@justn9124]

As someone who suffers from one of the worst cases seen with CRPS, I say thank you to this doctor!! Such a compassionate and understanding doctor who helped me to advocate for myself and understand CRPS more and actually get better. 4 years of CRPS in 75% of my body, but still going strong. This doctor is amazing, thank you sir so much 🙏🏻❤️

[@RSDSA]

Thanks for the kind words! We will pass them on to Dr. Getson! Sending love and positive thoughts your way.

[@freespiritwithnature4384]

I have it so bad like you ,I drip blood now if I have any stimulation. Coughing sneezing vomiting you name it , goosebumps omg this disease is hell. I hope your ok .

[@jillevers4710]

This 100% explains what is wrong with my best friend! Omg! After 13 years that if have known her I now understand what she is going thru. I wish I could show this to everyone her and I know. Maybe they will finally believe she is not making t his up or that CRPS IS NOT BECAUSE SHE IS CRAZY!!! THANK YOU DR. GETSON. 😊

[@paigemcgann6463]

I got this disease while LIVING in Houston after a fall. I saw about 15 different specialists; not ONE ever mentioned this. I moved to Virginia a month ago, and finally got diagnosed.

[@RSDSA]

Hello Paige. While we hate hearing that you were unable to get diagnosed in Houston, we're happy that you received the diagnosis in Virginia and are hopefully getting good treatment. Let us know how it goes and if you need any info, documents, etc.

[@karenatha7890]

I just made the diagnosis after 3 years of non stop agony. With the guidance of a new pain doctor. With some reading material and advised to research it I'm on my own. Voila! We have nailed it! I hurt now, but today was the best day in three years. My injury was to the GI tract from Covid. A few months later an endoscopy showed it. Now it's advanced neuropathy over all my body except my feet. Even the teeth falling apart! Wow! Abdominal inflammation and spasms. I get hot spots too.There went the joy of eating. Too bad we don't get earlier diagnosis, but go around being told it's in our heads, giving the disease much time to do such damage to our lives. Was a time when they didn't believe fibromyalgia was real, remember? I feel for you, everyone! I need a support group. Also I'll lose disability status with Social Security in a few years. How do I fight with the government with respect to the fact that I'll always be disabled? That's going to be enormously difficult! Anyone have help with aging out of disability status?

[@craigbrocchi]

It's glaringly obvious how educated and passionate Dr. Getson is on CRPS. I appreciate his knowledge and as a non patient of his I still try to follow his protocols. I know his disdain for Cymbalta and Gabapentin but does Lyrica fall in that category as well?. Everyday before taking the pill I wonder if there is something better

[@RSDSA]

rsds.org/medication-summary-intractable-pain-rsd/ (good thoughts on non-opiate meds)

[@lotusbloom7750]

Lyrica damaged my optical nerve

[@riyaa.8421]

I know it's been a year but if you see this, I'd love to know what you eventually decided with Lyrica and if it helped you? My mom was recently given Lyrica for CRPS on her hand and I've been so concerned giving it to her seeing other's past experiences and if I should avoid putting her on the medication. Please let me know your journey; I'd love to learn from it to help my mother. Thank you.

[@craigbrocchi]

@@riyaa.8421 I have tried lots of different homeopathic supplements to treat my CRPS, some do give me minor relief but ultimately the only thing that combats my symptoms is Lyrica. I would say that Lyrica does a very good job of nearly eliminating all of my symptoms. My issue with Lyrica is that it does make me drowsy and a little foggy in my thought process which was causing some issues at my job. Because of this I do not follow my prescribed dosage, I only take my pills prior to going to sleep and I skip my dosage before going to work. So basically during work I do have some symptoms but I have good cognitive control. My sleep has also dramatically improved when I started taking the Lyrica, quality of sleep is very important for people with CRPS, without it your symptoms will intensify. I'm sure that taking Lyrica long term has adverse effects on your body but I also know not treating your CRPS symptoms is very dangerous. CRPS is not just about pain, it also means that your autonomic nervous system is not working correctly. The Autonomic nervous system controls everything involuntary in your body such as breathing, heartrate, digestion, sleep, hormones and the list goes on. For me Lyrica is the only thing so far that appears to be helping control my autonomic nervous system, without it my body feels like I am always in "fight or flight" mode which is dangerous to your health. I really think medical marijuana would work very well for me in place of the Lyrica and it was recommended by my Neurologist but I work in transportation so it's not an option for me. Feel free to ask me further questions, I am pretty educated on CRPS, unfortunately!

[@surveyofcalculus5538]

"Gabapentin makes you fat and stupid!" Exactly! And then the doctor turns around and says well you are overweight, so that is the cause of the pain. ARGH! Nope. The pain came first, y'all gave me a BS drug that caused me to gain weight.

[@bobbieamaro4697]

This is EXACTLY what 14 year old daughter is going through!! Gabapentin was the worst medication she has ever been put on!

[@louisebrewer9612]

Watching from New Zealand, and so glad I have. So many new tips on how to self manage the flare ups well and naturally. I have shared this with our Kiwi CRPS group and I am sure it will help many of us here in NZ. I just wish our hospitals and doctors would get more on board with ketamine treatments here, but we are slowly catching up to the rest of the world thanks to us with CRPS educating our health professionals. As you say, it is the best way to get the disease known in the medical world. Thank you so much for posting this.

[@RSDSA]

Thanks for writing. please send us your the link for the Kiwi website as the link on our website is no longer working.If you do not receive our newsletter, please join here: rsds.org/joinmembership/

[@Knowmore007-u3j]

SO EXCITED TO WATCH THIS!!! I HAVE BEEN WAITING FOR IT!!!

[@RSDSA]

We're happy to hear this, Jenny!

[@jiminsko9165]

Finally a good Dr that speaks the truth!!!❤🙏

[@alisetait3132]

I think you sir for caring enough about this disease

[@sweetsweetsleep...6149]

This is a great video, full of information and compassion. I am starting Ketamine infusions Monday for depression and many pain issues that keep me in bed most of the time. I love what he said about treating the pain issues and that will address the depression. I also have a painful skin condition for 8 yrs that no one can tell me what it is. It feels like shingles. I've been to 4 dermatologists and UC Davis. No help. I just hope this new treatment helps. It is so helpful to listen to a doctor that doesn't look at his patients as crazy or making up their pain.

[@RSDSA]

investigate this possible condition: rsds.org/wp-content/uploads/2016/06/Dirckx_et_al-2013-Pain_Practice.pdf

[@mamadusty1111]

Is your skin stretchy? We’re you extra flexible when you were younger? Can you touch your wrist with your thumb (on the same hand as the wrist)? You have Ehlers Danlos syndrome if those things are a yes- possibly even with only one. Depression anxiety and all sorts of other stuff goes along with it. It’s a genetic disorder that effects the connective tissue. That means your entire body. Every nerve is literally “built” with connective tissue so that alone can cause spontaneous “mystery” pain. I’m discovering that Ehlers Danlos Syndrome causes CRPS and Fibromyalgia and all the stuff this doctor is talking about. I hope Ketamine helped you. I go in a couple days. But it’s so expensive I’m only doing one 4 hour infusion.

[@catelewis7223]

Thankyou… sigh of relief hearing you talk about this. It is so depressing seeing Drs who don’t believe me. So many Drs have no idea. I have my first ketamine treatment tomorrow. It’s a low dose so not sure if it will do anything. Fingers crossed. I’m in Sydney, Australia and just booked a thermography test from watching your video.

[@mitziphillips9820]

Thank you so much!! I've watched many videos on CRPS and you are the best!!

[@RachelCrochets]

First professional who made me not feel like I am completely crazy... how in the world can I get an appointment with a doctor that's actually smart like this man??

[@RSDSA]

Rachel, where do you live?

[@missharris5521]

I live in FL. Would i get so blessed to get an appt w/ this Dr.?

[@missharris5521]

PLEASE READ MY LONG COMMENT ABOVE & tell me what u think. I did hair for 20 yrs & cleaned homes for 15 yrs & also painted homes for 3 yrs plus 6 yrs of college... sports i played surfing, volleyball, cheerleading, basketball, played violin to name a few.

[@missharris5521]

Thank u!! Why does hospice give more pain meds when someone has a migraine??!!!! It makes me so mad! I gave my mom one of her prescription Fioricet & it helped!!

[@missharris5521]

Omgosh PLEASE HELP ME? 🙏🏽 I have a growth on my pituitary gland inside my brain ALSO, so my hormones are so not normal or good! I am 38 & have had my period for over 3 wks the last 2 times. And ovulation lasting over a wk each x. May i say more then one egg....

[@melodysheehan7760]

Thank you so much for understanding....I was Diagnosed in July of 2018 ...work injury in 2017...2 surgeries in 9 Months....first surgery was done with 3 small insigons... that is what caused my crps. Second was a knee replacement.... I haven't been seen by a Doctor since the beginning of Covid.. im a problem ...because they don't know what to do with me.

[@catsrule100]

What an excellent speaker. Very interesting talk.

[@melisa1439]

I'm excited to watch and I feel very comfortable with what's being said unfortunately know somethings way to well. I wish there was a way to get better treatment here thank goodness my primary care physician is trying hard to help me.. Thank you for sharing this with me

[@RSDSA]

Melisa, Please email us at [e-mail] and I can send info, also include where you live

[@niccoleshrider9794]

😭😭Dr. Getson, I wish you were in idaho! I am having many issues with CRPS. I was diagnosed with CRPS after a Total Knee Replacement in 2018. I do not think most doctors around here know about this disease. I wish I could have your input on my case!!😭😭

[@nancydrake423]

I am on Lyrica and the neurologist said the next medication would be Cymbalta or Elavil titrated. I would like to taper off the 400mg of Lyrica daily. I have gained 16 pounds on the Lyrica. I was an RN and find this very informative. I am now determined to with my Doctor try and decrease the Lyrica.

[@peggyknight5120]

My daughter 22 years old got hurt at work at Walmart in October. Workman’s comp said that she is fine. She was getting light headed, her right arm was freezing cold. Seen comp. Dr a few more times, then seen a pain management dr and she said crps. Tonight she text me from work saying her right side of her head was numb and she was slurring her words and talking slow! Last week they gave her a nerve test last week and her system is going nuts..

[@Bluesky-f2n]

I had a smaller "accident" doing some repeated movements with my arms. Suddenly my left arm went numb. The color changed to a pale yellowish in my hand. It was tingling and I could not use my hand , I could not grab anything for 20 min, just before my PT session. So I went to see my PT who unblocked sg in my arm. From that time, I started to have problems in my left hand arm, chest. My wrist is painful and when I move that hand the blood is pooling in, it becomes red, swollen. This is changing with movements. When I explained the color changes nobody seemed to understand because when they saw my hand it was not red. So I took picture to show my PT. I am on medication since. I tried PT, acupuncture, not much relief. Shortly after I started to have burning pain on the sole of my feet. It was almost constant, like literally walking on fire for 2 weeks at least, and on one occasion both of my legs went numb. I could not stand up, I could not feel my legs from knee. I ended up with my left leg involuntarily twitching in resting position, (the same side as my arm). I had brain MRI, negative. In the report some chronic pain syndrome and mentions that there is no explanation to my leg twitching. Finally after almost 2 years I saw another doctor and my hand pain is not improving since. That doctor thought about CRPS. Finally I asked for x-rays, and just got to know that I have a non-union wrist fracture in my left wrists, which never healed. All the professionals missed the diagnose.

[@oliviaortiz5157]

THANK YOU SO MUCH ❤️😊 FOR THIS AWESOME INFO, YOU HAVE PUT ME AT EASE CONFIRMING MY RESEARCH AND DECISIONS TO MAKE WHILE EDUCATING MYSELF ON THE DO'S AND DON'TS REGARDING DR ADVICE/TREATMENTS.

[@RSDSA]

wishing you God speed, please keep in touch

[@brendayourell8978]

Watching this now from Ireland.

[@RSDSA]

Welcome, Brenda!

[@mercy3219]

I have had successful treatment of optic neuritis, burning eyes and occipital neuralgia. I was given a sample of Ubrevly 100 mg (oral) and used a mix on altering days eye drops such as OptMSM, Nu Lids, Systane, and Zaditor -- some work better on some days versus others. If you can get samples and find success... I felt like someone was pounding a sharp stake into my left eye, at times both eyes. and the burning is fairly constant and the Ubrlvry reduced the pain by 80-90%!

[@shawnobrien5496]

I had a work related injury in January 2018 and as of March 13th of 2020 I had an above elbow amputation due to me developing CRPS and I am the first person in Canada to have my amputation from CRPS it was the worst case they have ever seen.

[@tammyfinster5743]

How is your pain now after the amputation ? Because I know of people that have had amputations due to CRPS and they say it didn't help due to phantom pain. And that it moved up beyond the amputation point.

[@shawnobrien5496]

@@tammyfinster5743 well I had no pain for 9 months and after the 9 months my CRPS has come back and now has spread through out my whole body now my feet are like walking on hot razor blades,not fun spend most of my days in bed because I can’t walk to me my live is over can’t live like this so I just go one day at a time.I wouldn’t wish this one anyone what I am going through.

[@MultiButterfly10]

Thank you so much for talking about CRPS ! Would you recommend IVIG for this type of pain ?

[@richardsilva7631]

Wonderful informative video agreed not enough Drs know about this condition. or how to properly treat it.i was diagnosed with (RSD) in my left foot that spread to right foot than back .I have a spinal cord stimulator ,a dorsal root ganglion stimulator and an intrathecal spinal pain pump .I'm still in pain. I wish I could see Dr Getson.

[@RSDSA]

Richard, where do you live?

[@brandonamison8950]

Thank you for posting this 😭❤️

[@naphtalilozano6137]

My mom has RSD/CRPS and she’s had it since i was 3. I just want to understand her better.

[@Christinesobsevations]

Listen to her and validate her is one of the best things you can do EVERY. Thing . Hurts . All the time .

[@alisetait3132]

The drs could learn a lot from the patients if they just and see the evidence of what we show them we can only get through this if we listen to each I have been living with this for 11yrs and it still shows me new things about this disease it’s never ending and inflammation absolutely have to watch what you eat and drink

[@DrEAMsaltH2O]

❤😂 This describes me, inside & out! I am now suffering from immune sys issues that mimick stroke.

[@rickscully9533]

I have CRPS in my left leg for the past 2 years. The pain is horrible. I keep telling my Dr that I want my leg amputated. I honestly can't handle this pain anymore.

[@RSDSA]

Rick, E-mail your # and we can talk. Thanks

[@rickscully9533]

@@RSDSA What is your email?

[@lotusbloom7750]

Are you ever coming to Australia??? I would love to you see you 🙏

[@chrispetrosh127]

I have suffered 31 yrs from rsd……. The pain is unbearable….I have called for an appointment…….

[@janicehilaski-roberts9873]

My hands are like that woman's from crps. I have no RA, can't get help for this anywhere, it's pissing me off being in chronic pain with nobody helping me manage it!

[@RSDSA]

Janice, where do you live?

[@theflatcat9250]

I had alif surgery 2 years ago. I know for sure I have crps in my left foot. It happened the minute I woke up out of back surgery, and I asked the surgeon about it, he said its circulation thing. Like what? I had to Google around for 2 years to figure this out. My foot is hot, red, and I sweat everywhere but my left foot. It has horrible dead, dry skin. I have been doing esthetics for 20 years, I have lotions and foot files etc, the more I try to file it, the more pain and dry skin I get. But the pain is what is making me want to off myself. I have 2 young boys I have been raising alone. I havent been able to enjoy any of it. My problem is I have been in the pain clinic for the last year. They keep telling me its chronic pain, and will not diagnose me. I have almost all of the symptoms except maybe one. There is only one specialist in all of Canada, and he is in Toronto, im on the other side of the country. I feel like they won't diagnose me because of insurance reasons. What can I do?

[@thecookbook3321]

My bone is more swollen than the other edema and more very happy someone cares enough my gosh the pain has increased so much 😢

[@rachels1616]

I have CRPS since 2018, it started in my left shoulfer and it spread thru my.entire body. My stomach is always swollen, so big that I get short of breath. I get really bad headaches, I throw up, I can't stand loud noise, my.eyes get blurry, double vision.I get spasms all thru my body. So bad I cry and my.rottweiler lays right by bed all the time, she.smells and licks my arms. She knows I am not well. I swell all over my body, I.sweat so bad that I go outside when it is in the single digits to cool off. I keep the tempature at 65 all year around the house. Also use two fans directly on me. I get tremors all thru my body, I will.use a cane to help me not to fall. My.eyes also get swollen, I will get dizzy, turn a bright red all over and turn a purple/ reddish color as well. I live in my bed, with a mypillow mattress topper. It helps. I do go.to pain management and even the drs are dumbfounded by what I tell them I experience. I also can't take any kind stress. Also.just started getting really stiff inside my joints and severe spaams. Thankyou for putting your video up.

[@RSDSA]

Rachel, where do you live? Do you want to talk? Email your # to me at [e-mail]

[@rachels1616]

@@RSDSA I live in Pa

[@rachels1616]

@@RSDSA I will.send my number to.your email

[@livchapman8051]

I highly recommend anyone with CRPS tries the Curable app and reads the work of John Sarno. It is absolutely reversible, and I've come a long way since doing Curable.

[@RSDSA]

Thanks for the suggestion, Liv!

[@isabella3025]

It didn't help

[@ivanapriotti6564]

Me neither :/

[@margaretchandler-cross-7811]

Lisfranc fracture to first, second, third metatarsals. This happened after I’d finished treatment for stage 3B bowel cancer. Caring for my dying man following fractures and closed reduction three plates 18 screws in situ. After the passing of my beautiful man I returned to the otheopaedic surgeon had an X-ray told him about my symptoms he could visibly see the color change in my foot, the oedema, hyper vigilant to any threat to foot. Nothing can touch my foot. Surgeon informed me he could not remove the plates and screws because I have a disease called CRPS. Never heard of it. Here I was thinking yay I’ll have surgery have plates and screws and I will no longer in my foot. Shy of 6 years of CRPS diagnosis. I’ve asked on many occasions to have my leg amputated. The CRPS has spread to my leg. I’ve been on every medication but I was sick of the drugs and went cold turkey. Frozen foot syndrome and at the same time my foot is burning. I imagine this is what frost bite feels like. Drugs don’t work for CRPS. Opioids are for acute pain not for CRPS. Cruel and brutal disease.

[@Iamnosey]

THANK YOU FOR THIS VIDEO! 💕

[@rdeh1678]

I live with crps in my left arm caused by a doctor making a huge mistake removing wrong ribs from my chest to fix a thoracic out syndrome , cut nerves by accident causing that caused a wing scapula then forgot his medication book but released me from hospital and then after 24 hrs the burn starts , burning red arm yet my arm is ice cold to touch , etc and worksafe ran 5 test all came back 100 percent positive for crps , my arm turns red fast hairgrowth, nail growth , twitching , bones in my arm are changing but yes I love what this guy is saying, and I have almost all the symptoms except astonia and I keep trying to use my arm to reduce loss of muscle, I got a 100 percent pension and did not even ask for it i begged to go back but because of all the test done and 5 pain specialist said I was a danger to myself and co workers and because the pain they refused me and now I am retired by 38 for life

[@ricktrimmer6642]

Everything you just said is totally bull shit. I have it in both legs and feet and still work LMFAO Hahahahahahaha

[@rdeh1678]

@@ricktrimmer6642 what you did not read is the doctor removed the wrong ribs from my chest had a second surgery to get the correct ribs removed so I have zero ribs around my heart and this is why one blow or bump to my chest would kill me , and this is why I am not allowed to work I am sorry to hear you have it in both legs but try having it with your heart exposed a shoulder blade that locks your arm in place , i have been in several studies in canada as my symptoms are clearly visible and have scared many doctors as at one point my arm went dark purple right infront of a class room of doctors my case is document in many medical journals , plus there are two types of crps I have type 2 which is considered real crps, type 1 in many areas of the world is not ,only type 2 in canada will excepted , but before u say bs get the full story. And my job I worked as a head shipper in a freezer warehous driving a forklift , i am only on one med to control my pain metadol , ketamine is bs and does not work

[@rdeh1678]

@@ricktrimmer6642 I just showed your comment to my pain specialist and her remarks basically were this person probably does not have crps perhaps a very mild case if he does as if you had it as bad as me specifically in your legs it would be very hard for him to work , but sadly some people think they have it but none of the test came back as a definite positive. If you do have i am so happy that you can still work as I miss my job greatly plus all of the other stuff , but there are many degrees of this and I suffer every day even considered doctor assisted death , but I am not a coward nor would I hurt my family by doing so. All I can do is take each day one day at a time , keep going to the college for medical science to show new doctors crps , volunteer working with abused dogs and work on my car collection when I have good days .

[@Landstalker1999]

@@ricktrimmer6642 Karma will get you.

[@cindymadden2830]

Yeah, yeah, yeah. I completely agree with you. Karma will take care of him and that nasty, hurtful comment.

[@cathyandmikenovak4553]

Gabapentin is the only medicine I have found that stops the bee stinging pain in my legs. What would you recommend for this type of pain? I do have multiple types of pain, but the bee stinging pain is really bad.

[@RSDSA]

what is your email?

[@nancyboal3581]

@@RSDSA A homeopathic remedy Arsenicum. ( from a long term RSD person)

[@cristobalmanuelmoreno.llan2215]

I have a disabling CRPS due to transfemoral catheteritation. Would make sense a regenerative treatment of those square milimiters with IPS cells and alike?

[@freespiritwithnature4384]

I cannot tell you how bad I have this . I can’t sneeze cough laugh ,vomit, etc . Any stimulus makes me burn to the point of dripping blood . Years of misdiagnoses,but last week I was laughing and with in seconds I was covered in burns . Now I have icepick headaches non stop , since last January. I had CTscan and narrowing blood vessels. I’m scared because my dad died early of stroke and I’m in agony to begin with. Now I’m starting to think ok do I need a Covid test because my nose is running non stop and since this jan it’s tripled pain wise in my head . The only other new symptom I have is difficulty swallowing. My neck / inside throat feels sprained and some difficult swallowing at times . Like a dysphasia inside my throat. This disease is hell . It went from burns to severe bleeding and now this . I have a severe deviated septum and if I touch my eyes or brows the nerve pain is excruciating inside my head and my eyes and nose . I sneezes this morning and the nerve pain was hell , it hurts to open my eyes . My glasses broke during Covid,so I haven’t been wearing them because the arms broke . No Drs on this planet could possibly ever understand this agony. The only way to describe my face pain is like being smashed over and over again,with extremely painful nerve damage. Nothing takes this away, and I’m on meds to make it bearable but I’m deadly allergic to all nerve pain meds,including gabapentin . I’m taking Vit E and now I’m at wits end because I have severe gastritis pain. Anaphylactic on lyrica and all anti depressants . Omg 😳 🇨🇦

[@lotusbloom7750]

Try LDN and P.E.A.

[@melanysmith3023]

I hope there is more research done for crps

[@cristobalmanuelmoreno.llan2215]

Anyone knows any case of CRPS caused by artery catheritation? I know only to articles in medical reviews. Thank you

[@nettnewson393]

How do I contact this doctor and explain my CRPS story to him?🤔

[@angiebutterfield5312]

Omg I need this guy to be my dr , I have this I’m sure.

[@RSDSA]

He is awesome. Reach out to him if you are in the NJ area: www.drgetson.com/index.html

[@missharris5521]

Thank u so much for bringing awareness!! I suffer from RSD in my arms. I have Suprascapular nerve impingements not due to cysts with severe to complete muscle atrophy. Ive suffered from this for 24 yrs. it took 21 yrs to get diagnosed properly & then i spent the last 3 yrs seeing top 14 surgeons including Mayo Clinic for which none could help me or have seen my condition. I need nerve transplants & muscle transplants come to find out b/c my muscles are 100% atrophied in my dominant arm and about 85% in my other. ANYWAYS; i got RSD 2 yrs ago when my dr. of Over 10 yrs decreased everyones of his patients medications. He decreased my meds to about 15% & so fast & so anyways, that is when & how i got my RSD. Im not one to sweat; well i was covered in sweat actually dripping sweat my whole arms. I wanted to die. I at that x got my 5th nerve condition test done at that time too.... so, maybe that would of helped me to get it too... idk; i suffer from chronic yeast infections too. I also had Rotator cuff and carpal tunnel surgery 10 years prior... who knows right. Maybe it was dormant and then when my doctor almost killed me by decreasing mean to 15% the trauma brought it out...

[@missharris5521]

Make sure to wear Orange Nov 2nd to help bring awareness for RSD!!!!!

[@DCarol-mf9cr]

Spero clinic worth looking into.

[@laurimas8845]

Yes! So many success stories from Spero treatment.

[@PatriciaBrumm-r2r]

I do Reiki that’s what I do to deal with my pain is Ricky I was talking to my brother and my husband did it too but I do Reiki. It does help. I had other people who were Ricky that helped me a whole lot. They all seem to know what was going on.

[@medusathecanecorso3465]

Ty, Dr, any patients have taken a COVID shot , any systems of CRPS flare up? Ty

[@RSDSA]

Please consult your physician for personalized medical advice, but we do have these two threads filled with comments from CRPS/RSD Warriors who have taken the vaccine: facebook.com/RSDSA/photos/a.10150168498873947/10157911553538947 facebook.com/RSDSA/posts/10157793109848947

[@Christinesobsevations]

Covid took me completely out of remission .

[@lewismiller4394]

I have listened to you many times. How can I get the Veterans Administration to try and understand CRPS?

[@RSDSA]

What are they requesting, if anything, Lewis?

[@lewismiller4394]

@@RSDSA They do not request anything. I have sold my house and moved to another area so maybe they would treat me. I was told this VA would treat folks with CRPS however they have no clue what to do. Now they are sending me to different doctors, pain medicine, podiatry, neurology, and now a different primary care provider because I showed them the one I have is doing nothing. None of these doctors will be communicating with each other as they are inside and outside the VA. The only hope I can do is that I can get these different doctors records and take them all with me in a binder and hopefully can communicate with me and through this binder I am going to make. I am going to make business cards with this a link via QR code linking to this video and others so maybe they will watch some of them and better understand this disease. That is the problem I have ran into with Dr's is they do not understand any of this. Would you have any ideas as what to put in these binders so to help educate these doctors. It is like on pain management Dr I went to first thing out of his mouth was we need to install a DRG, after a month after that surgery we will need to do some Ketamine infusions and then do numerous nerve blocks and injections in your back to reset your nerves. I am not sure that is the answer and have put this on hold for now. My CRPS is in my right foot and lower leg. I am not sure what it is but all of my limbs have severe deep pain in them now. What it feels like is someone is pulling my bones out of my legs and arms. I am not sure if it has spread or not or if it is something else causing this. I think now I know why it looks like I am pregnant, due to this video. Any suggestions to educate doctors would be very appreciated. Thank you and have a wonderful day

[@RSDSA]

@@lewismiller4394 ask them to watch this accredited video" rsds.org/accredited-course-on-crps-for-mds-and-rns/

[@Silveryback]

Perhaps reach out to a medical university, preferably a teaching hospital, and maybe you could get students who are studying to become a doctor to get interested in this niche, rare disease. Contact the professors, the head of the department, and ask them to look into writing a research paper on just this topic: THEN submit that to the V.A. You never know, it might work. A very important relative of mine has had this disease for over 20 years and hasn't given up, and I haven't given up on searching for new research and analyzing current results. If there were ever a breakthrough in understanding this disease, I would thank the good lord above. Too many people misunderstand this, and I'm glad there are now videos from men like this gentleman, and many other Internet references, to help people start to understand what their family member, friend, whoever, is going through. This is no joke and it's a major shame that so few doctors even know what it is.

[@melanysmith3023]

Thank you doctor at least someone admits this is real

[@claudesylling3915]

Does anybody know how to receive the powerpoint used?

[@RSDSA]

Hello, Claude! All presentations can be found here: rsds.org/educational-presentations

[@georgiamackinlay5706]

Do you have recommendations for treatment providers in Hills /Hawkesbury area of Greater Sydney NSW

[@RSDSA]

Hello, Georgia. Email the Australian RSD/CRPS Support Group at [e-mail]

[@mercy3219]

At 33:15 Discussion of dental issues. I had the same issues as discussed (I also have complications of Myasthenia Gravis and am on O2, plus I have Reflux). My dentist advised me to address the bacteria and lack of moisture by ingesting approximately 2 tablespoons of xylitol per day. I did that by buying the xylitol sugar and adding it to my drinks and I bought the hard candies, gum, etc. from Dr. John's. After repairing the teeth that had breakage or caries, I was able to restore my teeth -- they are, again, white and remineralized, by using a daily ingestion of the candies with fluoride "repair" (Pronamel) toothpaste. What convinced her that I wasn't being lazy in my tooth are was that I had no calculus forming at the base of my teeth. Please consider discussing with your dentist if you have these issues!

[@bearcat8817]

May I ask where the Doctor is located? Is he accepting new patients? I was diagnosed 20yrs ago., my Doctor at the time was Dr. Hooshmand in Florida. I had to move but I believe he has passed away. I have a Pain Doctor but he doesn’t do any research on new treatments. I am very interested in new medications or ie treatments. I live in Ohio!

[@RSDSA]

Dr. Getson is in NJ (www.drgetson.com/index.html). Please email us at [e-mail] if you need a list for Ohio.

[@susiecunningham1566]

I had the pleasure of having Dr.G as my Dr. Following a car accident back in 94 He's absolutely the very best no doubt. He diagnosed me with C.R.P.S. and at the time I recall his words to me. "Excellent name for it Hillbilly ( my nickname) right? Cause it's a crappy disease.😂 I agree and which of us don't need a good laugh? And like many others no other Dr. found it due to lack of knowledge on it even said there's no such thing . Me being an outspoken person that I am told them wish you had it instead of me that would quickly change your point of view! And said this appointment is over and there will be no other! Dr. G. is the most educated Dr. I have found on the C.R.P.S. disease. And has the best bedside manner ever. He never rushes a patient out of a visit .He's very understanding and compassionate. He also sent me to the very best pain management Dr.Kenneth Rogers. And the best Neurologist in the area Dr.Steven Mandel. I couldn't thank 🙏 Dr. G. enough. Due to life changes I moved back to my home state and I do miss having the very Best knowledgeable Dr.on C.R.P.S. Dr.Phillip Getson 🥇🎖🎖🎖🎖🎖🥇I wish you the very best Dr. Getson and all who suffer with C.R.P.S my prayers go up for each of Y'all 🙏❤🙏

[@jmdelaive]

Hi , what is "Zai pan" at 56:00 i dont understand the word . TX alot anyone !

[@jennifermaust9189]

Where can you get Neurotransmitters testing done?

[@DrEAMsaltH2O]

I. AM CURRENTLY TAKING GABAPENRIN AND TERGETROL WAS ADDED FOR THE FACE PAIN.

[@trevadacheff4093]

where near Carthage Missouri does thermography? I have UnitedHealth care and medicaid

[@RSDSA]

one google serach: search.yahoo.com/yhs/search?gdpr=0&hsimp=yhst-goodsearch_yhs&hspart=goodsearch&p=thermography+in+MO&param1=UMtDgXmeGHQFv2CrBcO0QbUwNl7si7jdjkXZuEMPnDs&param2=8fe0af2b0df8da6d34e70da1465aa091

[@jo-annandrews1904]

Yes, I think I helped my doctor release me from a lot of the pain. Hydro - home self treatment fused with lavender. A small (thumb) size piece of brownie with infused THC (to help me sleep). I do 1000 piece puzzles to help my brain think. Her prescription of a strong topical for daily used. And I followed her exercise schedule. Pain is manageable now. (My foot looked like the foot on the first slide) My sister has “fibromyalgia” she’s always in pain and does do anything for herself. I’m almost cured.😀

[@c123ray]

Please share this video with your sister. 💕

[@Christinesobsevations]

I wonder what would show up if my body was tested this way ❤

[@nancyboal3581]

It was disappointing you did not discuss the acetocholine dysfunction in RSD.

[@lorimitchell2589]

Do you have a suggestion for a Dr in Las Vegas

[@RSDSA]

Hello, Lori. Please send us an email at [e-mail] so we can send you our Nevada list.

[@Rain11Eleven]

My doctors have said its crps or an auto immune disease.... i need help!

[@RSDSA]

email us at [e-mail]

[@humility1st]

I am depressed because my pain is untreated. 41:05 CYMBALTA horrific with flashbacks also yes Neurontin made me fat and stupid. doctors have forced me to take these and black listed me detrimental to my life.

[@brendamyers6320]

they could see I wasn't making it up.. foot black.. unable to touch.. My muscle wasted away.. horrible illness..

[@dr.premlatadangi3676]

How can we meet to Dr Geston.where he works

[@RSDSA]

Learn more about Dr. Getson at www.drgetson.com!

[@nancyboal3581]

A Sphnoid block will stop the upper body pain of the RSD.

[@rachels1616]

I also get numbness throughout my body, severe weakness, burning pain, and extreme weakness

[@nancyboal3581]

@@rachels1616 Look up the block for migraines. I have a doc that taught me to be able to do it on myself.

[@marthaburns5370]

I have 26 medical conditions including Chronic Regional Pain Syndrome Syringomyelia Syringobulbis Syringohydromelia and Fibromyalgia I am allergic to most medication I wish I could find I Doctor that would not give up on me

[@RSDSA]

Martha, where do you live?

[@thecookbook3321]

I was in bed for three days after emg test

[@genericamerican7574]

I used a big dog bed under my feet in bed. No way to kick it out and usually it has cedar chips in it.

[@TheMarymarymary]

What’s the name of that book he said to read? The S….. ???

[@MELwithRSD]

Why would I have a bad reaction to Ketamine? I was in a 4 hour infusion trial x 5 days but developed almost an immediate migraine each time. By day 5 I was hallucinatory…thinking these poor nurses were trying to kill me 😳 Is that just my chemical makeup or should I try again. I’m 3 limbs involved and systemic 10 years in now. Thank you for all you do! 🙏❤️

[@rebeccaschultz7912]

You may gave mthfr gene which prevents your body from metabolizing meds & nutrients and has trouble detoxing.

[@rebeccaschultz7912]

I didn't do well on it either.

[@MELwithRSD]

@@rebeccaschultz7912 Quite possibly. I’m allergic to most opioids, which I gave up on years ago seeing as they did nothing anyway. Luckily I’m getting a new cervical SCS implant in a few weeks, so that will hopefully continue to help with my arm. (The original unit died.) My neurosurgeon has raised the possibility of a 2nd lumbar unit that might control the burning/swelling in my feet 😍 I’d love to get OUT of this wheelchair!! Hang in there Rebecca … life is different with any disease but there are still so many moments to laugh/especially when you make someone else laugh! We are the “Mighty”.

[@jeffdrake8837]

can someone derect me to a support group?

[@RSDSA]

Here's a link to our support groups: rsds.org/find-a-support-group-near-you/

[@angelstewart7671]

what is Dr getson's email address?

[@RSDSA]

Angel, please email me at [e-mail] and I'll forward your question as I do not have permission to share his email

[@rachelsantilli1755]

Another part of the reason that you see cognitive struggles with CRPS is that when the body has extreme pain the brain's capacity to focus on anything other than the pain is hugely affected. It's like 90% of the brain is extremely pre-occupied with the pain of standing, breathing, the arms, legs, spine, head, GI tract and pelvic...it's a lot to take all at once and listen to someone speak about something that may or may not be interesting.. It leaves you maybe 10% brain capacity focus on the present situation and the person before you. So stuff gets missed. You get lost in pain. What did you say? Sorry I was listening best I could. Lightning stabbing electrical jolts are jabbing me while trying to focus....

[@marcusaurelius2242]

Somatic cortex of the brain.

[@plato4414]

So true Rachel! Ugh! Makes one angry and I feel the same....PJ

[@plato4414]

Gosh darn right! When was this produced as today is 6/2022.......I'm in contact with the Italian researchers as I believe the U.S., unlike this astonishing Dr. G, are sitting on their lorrels cause there's not enough dollars in it for them!

[@dorenehendricks6627]

My rsd/crps is so aggressive there is no cure it's the worst pain imaginable I cope and suffer every day for 20 years no medication has help but made me feel horrible aspirin is all I can take more bad days then good and life goes on just sayin

[@jiminsko9165]

dr Tim Tollestrup in Henderson NV !!!!

[@scottc336]

"drink at least half of your body weight in water daily"???? I'm not drinking 40kg of water, and neither is any other human, wtf.. Please tell me it's a typo!

[@TheMarymarymary]

The Secret by Rhonda Byrne

[@doublehelix1185]

Arg! YT wont let me watch this!

[@doublehelix1185]

Weee I got it now!

[@RSDSA]

Happy to hear this! It may have still been loading since it's a fresh video. :)

[@doublehelix1185]

Thank you!

[@Ronjasita]

Could you open this video (and all the videos on this channel) for translation? I would love to translate this one and some others into german, as there is a lack of brilliant material like this for people who cant understand english.

[@RSDSA]

When watching the video on KZbin, you can click on the Settings button in the bottom right corner (the screw) then click Subtitles > English (auto-generated) > Auto-translate > Select the language they want.

[@njjn]

Ketamine??? There must be another answer

[@alisetait3132]

They sure don’t understand this disease and it’s so offensive with some of the things they say it’s insulting it’s a brain issue as well

[@TheJustonemore]

Oh my I sweat like that with my right foot and ankle my whole lower leg is always wet. I have gotten the Belly then I got 2 hernias one got operated one he other is in my belly button but they won’t do surgery I have it in my belly I’m sure. Is this thermography in Alberta Canada that know this wickedness.

[@RSDSA]

416.636.2916 3910 Bathurst St., Suite 401 TORONTO ONTARIO M3H 5Z3 Alex Mostovoy is the doc Nice man

[@Rain11Eleven]

Crps testing dummy right here if you need 1 ...pls im out of ways and ideas.

[@RSDSA]

rsds.org/medication-summary-intractable-pain-rsd/

[@susiecunningham1566]

I need Dr. G's E.mail