Wow, Its as if i made this youtube, About myself,brilliant. Thank you.... There is f...all wrong with you, I get that too. Keep going Sending love blessings and respect 💟🙏🕉 xxx

❤ Thank you for sharing and I totally understand.I am a CRPS sufferer as well and has been for 7 years.Lucky you that you can work.I can stay up and cope for only 30 minutes to 1 hour.Pain is there 24/7.Much love.XOXO.

Thank you for your positive words. I am 57 and have had CRPS for 3 years. You explain everything so well. I have thought my only way out of this is to end my life, so many times, sometimes daily for months on end. Thank you for reminding me to keep on fighting. ❤

God bless you. I have CRPS too and about to start a 14 week treatment program at the SPERO Clinic in Fayetteville Arkansas. They seem to have great success treating it. No meds, two stimulators, countless nerve blocks, ketamine infusions all fell short. May God bless you and heal you.

I have a friend who was diagnosed with CRPS at 11. She was also diagnosed late, and doctors tried for over a decade to try to manage the pain. She decided on a below knee amputation and is now pain free. She was not a functional person towards the end of her CRPS, and everyone now agrees she is finally living.

Try Spero Clinic Arkansas Dr Katrina. They cure CRPS. It’s their specialty

You have peripher neuropathy which can be treated surgically in many cases. See the study by Dr. Lee Dellon Surgical treatment of CRPS of the upper and lower extremities. I was unable to walk for 27 years. I walked the day after my surgery by Dr. Tim Tollestrup in Las Vegas. He is the top chronic pain focused peripheral nerve surgeon. See my video: CRPS a pain Gone After 27 Years. Contact me for more info.

I was diagnosed with Type 2 CRPS about ten years ago, it began in my left foot and quickly got to the point where it was affecting both feet. I was told I was lucky because I got some relief taking Tramadol 24/7, I know many have no such luck. When Covid hit I began taking 5,000 itu's of vitamin D3 on a daily basis, as a result I am now COMPLETELY pain free, I'll say it again, COMPLETELY pain free, and I have not touched painkillers for well over 2 years. It took about 3 months to notice my pain was decreasing, and another 2 for it to disappear completely. Please, please give this a try, you have nothing to loose and everything to gain, especially as most will be very D3 deficient. If your not on Warfarin take it with vitamin K2, this will help your body fix the calcium in your bones. Take it with fatty food, it is a fat soluble vitamin. I hope this helps somebody, I have my life back, it would give me great joy if this helps anybody else.

Ive just recently been diagnosed with it but some doctors dont take the diagnoses. It gives me alot of hope seeing the wonderful life she lives with everything she goes through and has gone through. Im trying my best to stay strong through all this. thank you for making this video and sharing some light on what we go through and sharing your sisters story with everyone.

I was diagnosed with CRPS 3 years ago and I have fibro. I was diagnosed 6 years ago with Fibromyalgia. I cut my right middle finger on the knuckle down to the bone. I had surgery and my middle finger, ring finger and pinky finger on right hand are frozen now. My index finger on this hand is a "trigger" finger now. This is a horrible, painful condition! I'm 55 now. It has spread to my whole body now. I take pain meds to try to cope. I have all the symptoms in this video but worse. My muscles are wasting away and I'm exhausted all the time. I have tolerable days. But mostly, it's excruciating. Nobody knows this level of pain unless they experience it. 🥺

:( I wish it would stop.

Have had it now for 23 years. In my right hand and both feet. Never stop fighting “

I’m not a warrior been diagnosed few weeks ago. Can’t take it don’t want to be here I’m on gabapentin and they probably make me less of wanting to fight. I’m drained and defeated I’m 57 and my left foot is gone pain to my top leg 😭 Proud of you SARA 🎉

In 2010 I was diagnosed with RSD/CRPS after a trauma to my arm. Since then it has spread to my jaw, and my legs. Before drs kept telling me I’m crazy, I’m imagining it and so on. I was always told you LOOK fine, nothings wrong with you. They did spinal nerve blocks and was about to do a spinal cord pace maker, I refused it.I was put on highest pain meds allowed, was on 5 seizure meds as well. Nothing worked for me.No one knows the pain except us diagnosed with it. Life is very hard with it but I trek on, I refuse to let it run my life and control every aspect of everything. We with RSD/CRPS we are truly fighters and warriors.

my daughter has crps i understand

I'm sorry you have to deal with this I have spasticity and it affects my walking sometimes sometimes i need to park close people need to stop judging people who have handicap parking tag they gave it to us for a reason

I have a disabled badge too but your disability is not always visible

I also get up early the same time because of my CRPS

I have found that when talking to strangers about CRPS, I simply say that I have a systemic neurological disease that is progressive and without a cure. That seems true enough to me and they appear a bit overwhelmed by all the words. I don't hear much after saying that!

This video is great! I hope one day my vlogs can look more like this

Love that you did this for your sis. But omg that chilli treatment! knowing that Fire CRPS pain oh my God, just horrific! Has she tried rTMS or ketamine infusions? please send her my love, from a fellow warrior ♥️

I have this. I've lost everything to thikl condition job home health etc

Thank you. Very informative. Very well presented and explained.

I have CRPS also, and it's excruciating, it's a hidden disability which is poorly understood. I have it in my legs after an injury and operation. It flared up after that. Well done for posting your video. It's a perfect description of the syndrome and highlights the need for better understanding of the condition

I have crps so glad to see aware

Hi. I happened on your video because I'm having a really difficult time coping with my CRPS and i was looking for help. You and your sister have really inspired and comforted me. I realized that I CAN live with this...and that's both the inspiration and the comfort. It's been difficult since I was diagnosed, going on 3 years actually having rsd now. I appreciate and wanted to thank you.

The Spero Clinic in Arkansas can help. They helped me after 10 years. Example: kzbin.info/www/bejne/nqWygH6dgqionaM

In the US we do not have medical care for those that need it most. I have had CRPS since 1994. As a pre existing complex medical rare disorders, I do not have access to care. They will not treat my pain. Murica is a bad place to be ill. I have Ehlers-Danlos Syndromes and have had pain since birth. I am 61. Thank you for your love of sister. I have a brother 3 1/2years younger than me too. Love and thank you for reading this.

I also have full bodied CRPS, I Have It Everywhere, I Had My Teeth Pulled & The Dentist Messed Up. Within Four Months I Was Bed Bound, I Thought I was going to die, I cannot even eat the food gets caught in my wind pipe I actually feel like I am blow up and need someone to get it out of my windpipe.I pray to die, there is nothing left to live for, I just ask God over and over for God to free us from this hell. We didn't deserve this, why does a little child have to suffer like an inhuman animal. My prayers are with you & my prayer's go out to us all who suffer with this devil's illness. Help us Father !

Well..... I have crps so bad it went after my heart. Caused takkacardia. I've had two major heart surgery witch almost killed me. There's a dr. Jay Josh in Chicago worlds leading expert. Check him out. I haven't seen him but I wish I could afford it. The company lab-core has filed for a pain tester application for patents. I cant that will help the medical industry. It works like a diabetes tester. And it give a level in your blood about your pain. I wish ever dr. Had one.

Thank you SO much for sharing your story with us. Continue living your best life. I’m right there with you.

I broke my ankle and developed RSD, CRPS many years ago. Your story is so similar to mine...I’ve lost friends, socializing,. I’m a Nurse and co workers don’t get it

I am 58 and with crps I have just seen this story I know now I am not on my own

I'm August 14th 1989

Very good video. Don’t let CRPS take you down. It wants to cripple and disable you. Movement and exercise is also a key as shown in the video. Bisphosphonates are the best “cure” currently available for those in early stages of this disease. Look into this, it’s the best hope we have. Neridronate worked for my wife who was in stage 2. She’s very close to full remission. Research Neridronate in Italy or look into Pamidronate here in the US. Ask your pain clinic doctor about administering it. We’ve had both. The Pamidronate certainly helped but the Neridronate was the silver bullet. Our insurance also paid for the Pamidronate infusions. Italy was out of pocket, but it can be affordable to most. God bless

Why is she wearing glasses only at work?! Even when driving a car she doesnt use them... The glasses dont seem to correct a lot... you clearly see that when you look in the glasses that her facelines are undistorted, With these large lenses, you would expect some distortion.... It is almost as if the glasses are “fake” (i.e. not providing any correction)

Great explanation of the culture of Bia (beer) in Vietnam.

Cool video Toby, keep it up! Deserves way more views, really interesting docustyle video which is really easy to watch and understand. You've got yourself a new subscriber! 👍

Bia Hoi helps people connect with each other. Bia Hoi helps people to have fun. It was a fun party with Bia Hoi. Very interesting video. Merry Christmas!!

I hate this!! I’m 13 years young and I have it I’m both my feet and it’s the most worst thing in the world !! I hope all goes well for her xx

What an amazing video. I have chronic back pain from a herniated disc, and I need the painkillers. I don’t know how she does it without them. Why didn’t they try something like OxyContin, that doesn’t make you feel so out of it? IR painkillers make you feel much more drugged up. Either way, her fighting spirit and gym regimen puts me to shame. Keep up the good work.

The problem with this disease is there truly are not enough studies and research because there’s no money in it. And that is truly tragic. I’ve spoken to a lot of doctors about this and some expert help where I can find it. There are more than 300,000 people affected per year, myself included, perhaps more because often people are misdiagnosed and actually have CRPS but it is ignored or misdiagnosed. You would think that’s enough to get science and medical community to pay attention but it isn’t. CRPS is considered a rare disease and therefore is not paid attention to and is not considered as severe a condition as cancer or something more common but it ABSOLUTELY SHOULD BE! CRPS is an autoimmune inflammatory dysfunction of your central, peripheral and autonomic nervous systems to trauma. It affects all walks of life from children to elderly. Medications aren’t the answer. We need to uncover treatments to treat autoimmune function and we could unlock all these other autoimmune diseases etc. If you added up all the autoimmune diseases together, including CRPS, we would have astounding numbers and maybe the scientific and medical community would pay attention. It’s not even among mandatory courses in medical school but again, it absolutely should be. It must be immediately diagnosed and then immediately treated. The worst thing you can do to CRPS is leave it untreated or refuse to treat it. Me and your sister are perfect examples of this. I’m so sorry your sister is going through this still Toby and all my fellow CRPS warriors are continuing to live in this pain daily for years. As a CRPS survivor myself, I can tell you the struggle is real. Stay strong-support and love goes a long way. Your video is pure love. I’m appalled at what some people say, things like what Sara has had to hear in her time. It’s important not to lose yourself and keep educating yourselves and others, so they stop making such offensive remarks, among other things. Create awareness. Yes like some have said Nov. 4 CRPS Day Wear Orange! Keep fighting. Don’t give up. Demand second and third and fourth opinions. It is the most pain a human being can experience, it should be far more discussed and researched than it is. For those who are looking for answers, I have not walked in over 3 years due to undue delay and refusal of treatment by workers comp. after I suffered a severe sprain from falling downstairs at work in May 2016, so it was too late for me and my condition worsened by the time I won the appeal and did start receiving the right treatment. I have had spinal lumbar corticosteroid injections, hydrotherapy, rigorous PT regimens and in May 2019 after 3.5 years with this disease I finally underwent Spinal Cord Stimulator implant surgery and while it is not a cure (There is no cure, like cancer once activated it can only be put into remission) it did help make life more tolerable but I am still struggling everyday and still not walking. I don’t sleep. My legs continue to turn purple in a downward position to this day and I have multiple violent spasms upwards of 30x daily. Still in pain. Still looking for answers. Early detection and immediate treatment is key. That’s the most important lesson we can take away. You can’t say that enough. Not one most efficient treatment has been discovered and not one treatment works for everyone. Everyone is different. But the most common treatments now seem to be SCS implant and injections, and hearing more about ketamine and mircocurrent treatments. Keep looking for solutions. Don’t give up. Get the word out to everyone you know. I’m continue to investigate my disease, as well. We can do this! Here are some links I found helpful, not paid or sponsored by these organizations: rsds.org kzbin.info/www/bejne/rJ_Sk5-efr-CetE kzbin.info/www/bejne/aJ_TlaeuocRljqc kzbin.info/www/bejne/qYbJi4iGjNFlbZY www.seeingyouwell.com www.medtronic.com/us-en/patients/treatments-therapies/spinal-cord-stimulation-chronic-pain/therapy-overview/how-it-works.html My device is Medtronic. It may be worth looking into for Sara if she is still struggling and for any of you struggling. It is scary of course to think of implanting something in your body, it took a while for me to consider it but it is far scarier to live like this without any form of relief. It has given me some hope, but unfortunately for me there is not just one fix all, but a combination of things to help put into remission. Those of you living with this disease for decades, you are an inspiration. My Mom, and her Mother being two of them. You are strength. Going on 4 years in May 2020 for me and it’s challenging to say the least. We gotta keep on going. Every day above ground is a good day with family and friends. Support is paramount!

I’m so so sorry you’ve gone through this. I too have this and mask it well. I’ve had someone say that about the parking. I cried. That is disgusting people have said that. No one understands. No one gets it. I’m sorry. I cannot believe that you don’t take any medications. I wouldn’t make it through the day. How’s your sister doing now? I use something that’s helped me a lot. Can you connect me to your sister or message me so I can share what I’ve found in Canada?

Wow! What a story - what a team - what a movie!

I have CRPS in my left arm & I know YOGA is saving my body & soul. Keep up the hard work & don't stop. CRPS doesn't, so we shouldn't. We shall soldier on & face the battles with a stubbornness that is unrelenting. We will & shall prevail despite all obstacles in our way. NAMASTE

Without damping the energy with the tears rolling down my cheek, I feel I have heard a kindred spirit. Well done. Information is the key. And if that info turns someone around and stops someone doing something stupid..... which people do when there is no hope good on you. THANKX MATE

so wonderful to see someone with the same condition as me being so positive. I'm a fighter too staying positive and fighting against losing muscle. keep fighting women your not alone we will overcome this awful disorder!

Fantastic video. Has given me a lot of hope. Thanks for sharing ! Please make sure parents with kids who have crps see this and importance of moving those limbs !

I also was diagnosed with CRPS

All this from a stubbed toe. Pain levelsof 42 - mine is chronic back at 30, i can't imagine a 42 permanently. Stay strong, i hope one day you get a break and a "cure" gets to you.