Living in Pain - CRPS

[@danielleriggs9631]

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!

[@sciencescience7102]

I have CRPS in my arms and hands. I've had it for 21 years now, after a neck injury. So many things Sara said resonated with me. First, you've got to make a conscious decision to live your life despite this disease. You've got to be honest with yourself about your limitations (and do things like cut back to part-time work), and you've got to listen to your body. When you are having a bad day, you have to give yourself permission to take it easy that day. CRPS is awful disease, but it doesn't have to ruin your life. Thanks for the film - and God bless you and your family!

[@karencampbell9358]

You are an awesome brother! I have had this for 6 years now. I'm undiagnosed to this day! It has spread now to be all over! Pretty much full body. I'm still on a mission for a diagnoses for sanity. I have no doubt what so ever! God Bless you and your sister!

[@heatherhartman6474]

She is an awesome and beautiful warrior! Much love

[@caroldaviddaviejohnson2225]

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

[@WoundedThrivers]

I'm blown away. Her brother loves her enough to ADVOCATE for her by doing a video. Typically, families fall apart and the disabled person is not believed nor is there any interest about their life. Shoved to the side. Worse, the caregiver, possibly a spouse, is shoved to the side too. And we wonder why the divorce rate is 75%? The take away from these video's is wanting to be believed and included. To be treated as a valuable person like we all are. How fortunately Sara is to have such a loving brother. I know my husband loves me, and he shows it. But if you asked me if I felt overall loved? Absolutely not! And most can fill in the blanks of WHY! This is amazing to see the love between these siblings. Not usually seen... I am an advocate and have CRPS, TBI, DYSTONIA, AND OTHER ISSUES WHEN THE BRAIN DOESN'T WORK WELL. Even tho, I'm accused of things I do not do, I also push myself because I know if I don't... I will waste away. I don't sit and think of silly things to do or say. I am busy! I have a life, but it wasn't the one I choose. Those that are around us over days at a time, are amazed. Other's think I'm lazy or whatever. It takes strength, and I wonder if those who do the accusing would have the strength if in our shoes. I'm asked to do things that one usually would be asked, but since I'm fine.... Yet, if I need 15 minutes... way to busy for that! But it's better to do as she mentioned... keep your mind clear and do your best. It makes me sad to know that I'm a "throw a way", a "nobody" (unless needed) by those who one would think would care. I don't get it and never will. And in another group it was shown that the worst offenders were "Christians". lol. I do know that I would call my friends and family that name...but somewhere the love got old. So it hurts real bad when I'm getting the sermon and wonder if they think about what was said. "I'm too busy"? I'm too busy! Keep drowning and "I'm too busy". That is why I know LOVE when I see love. I do not expect people to jump when I speak. When we are desperate or need help, the answer is NO... but then then we get asked soon after.... "Can you....?" Please message me if you would like to participate in a short survey, and the docs on Linked In and other media's are excited. Takes 5 minutes unless you decide otherwise. Stories are always welcome. The FB page is an open page because it is educational . That's the idea! If you want to tell your story without your name, then send it via email or messenger. Hope to hear from you! Cathy Carlile Turner (personal page) Chronic Pain Education for Patients Friends and Family. (FB page) No joining, just Follow. YOU ARE BOTH AN INSPIRATION!

[@shelleyhermes268]

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

[@sundaysommers1476]

There is a chronic pain focused peripheral neurosurgeon in the U.S. who might be able to eliminate your pain. See my video: CRPS PAIN GONE AFTER 27 YEARS and BEATING CRPS. More testimonials on his website.

[@sharonbrown5702]

Hi also have crps in left arm and right shoulder I hate so much I live in London would not wish this on anybody glad to see someone on u tube is talking abut the condition lots of love keep vloging Sharon Brown ❤️

[@genericamerican7574]

Hi Sharon from California redwoods

[@sharonbrown5702]

Generic American how are you doing

[@genericamerican7574]

@@sharonbrown5702 not good. I hope you are managing. We have liars in charge of taking everyone off pain meds. They go on TV and say they aren't targeting pain patients but it's propaganda. Why would the question come up if it wasn't happening. I was just a number. Now I'm just a liar for saying I'm sick and suffering. They threw me in a mental hospital for trying to get help. Apathetic people should never be put in charge of people's lives. I hope you have some help it's really frightening pain that can spread from mismanagement. Keep healthy that's really important too. 💜💜🖖

[@futureofhealthforlife]

You guys should check our film on crps, its on our youtube page, do enjoy.

[@genericamerican7574]

@@futureofhealthforlife thank you 💟 I watched it last year and everyone involved are heroes💟 From what I gather there is more in the works. I am so proud of all of you for the hope you have brought to people who survive crps🎭🕊

[@adapickett4093]

I'm a fellow CRPS warrior too. You are such a great brother to get your sisters story out there. alsi, your sister is an awesome warrior to get up every day, exercise, and hold down a job! I've had CRPS for over 6 years and it's been a living hell! So glad i have Jesus in my heart so i won't burn here and in the after life...lol! Please tell your sister she is so courageous and my hero! We will continue to pray for a miracle or a cure, which will be a miracle!! God bless you both!

[@TinyDancer0315]

I think it's beautiful that your family supports you!

[@MioThief]

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.

[@rhondagiesbrecht4901]

Thank you so much for this. What an awesome brother she has, to learn about her condition and make this and share it. I will share this and hopefully it'll help others understand what I live with.

[@jessicalilyea7723]

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.

[@MargaretBoyd-go1lq]

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. ❤

[@humility1st]

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.

[@jimlaughlin3559]

Stay strong! You are not alone. So much of what you said is how I am, mine is a bit different yet the same. I really hope more people see this video. This disease been around too long not to have more known about it, it frustrates me.

[@meandmycrps]

Your'e a good man Toby... you have a brave sister. I live with CRPS in my leg - your sisters story had me in tears as it could of been mine or any one of my friends... here is to hope of a cure!

[@sundaysommers1476]

I had it in a leg and foot for 27 years. I couldn’t walk or wear shoes or socks. I used crutches and a wheelchair and lived on my sofa. A year ago I had a surgery that changed everything. See my video: CRPS PAIN GONE AFTER 27 YEARS and another BEATING CRPS.

[@drpremlatasangwan435]

@@sundaysommers1476 Hello madam is it true ,then tell how ,where we have to approach for treatment.

[@sundaysommers1476]

See my video. His name is Dr. Tim Tollestrup of Las Vegas, Nevada. You can go to his website and see many more testimonials. You can send him your medical history and he will evaluate your case for free.

[@glendamock2041]

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

[@evabell1802]

I first got diagnosed with it at 11 now im 13 and am currently on crutches all the doctors are saying that nothings wrong she just is over reacting. They diagnosed me with crps and it just gets worse. I cant fit on my shoes and not that much weight. Everyone says oh shes faking it she doing it for attention. Its like no one gets the pain and suffering you go through just by a bit of a bump.

[@lisagreig2003]

Eva Bell , I'm so sorry Eva with everything that you are going through..I myself have been through the exact same thing.People not believing in me....I don't know if you have heard of Traci Patterson in Irvine California .She has put many people in remission..You might want to look her up with your parents...If you ever need to talk to someone that understands what we go through I'm here..Take Care and stay strong 💖

[@kristioen7866]

Eva, I am so sorry for what you are going through. I have been through this as well. I got my CRPS at age 10 but wasn't diagnosed until almost 35 years later. I have finally been able to stop the pain and live a normal life. Do your parents support you?

[@nathanharris2151]

I'm 17 and I'm in the same situation as you it's a shitty time I guess we just have to tough it through

[@futureofhealthforlife]

You guys should check our film on crps, its on our youtube page, do enjoy.

[@blackhorse11thACR]

Sorry you have to suffer with CRPS at such a young age. I have been diagnosed with CRPS since 1997 at Mayo Clinic. I had the same problems with doctors who wouldn't believe how much pain I was in. I sympathize for you. People have no idea what your going through. Very sad. Hang in there.

[@whitheeres86]

Thank you so much for making this video! I find it very hard to explain to others what all this feels like & I feel this expressed it well. Sara, I’m so sorry you are dealing with CRPS, but I thank you for your example of bravery & hope. And to the dear brother, thank you for loving your sister well & supporting & believing her. And thanks again for this wonderful film! I’m about to share it everywhere!

[@futureofhealthforlife]

You guys should check our film on crps, its on our youtube page, do enjoy.

[@Chelbells]

Loved watching the video, Im so happy you have a strong support system.

[@brendayourell8978]

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 !

[@robertinnes7532]

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

[@lisagreig2003]

I have CRPS...It stared from a crushed foot..It's now in both feet legs, hips and all organs...From this I got fibromyalgia and Ucolitis ...For 19 yrs now. I can't work...How is she able to work...I have been bedridden off and on for very long periods of time....Thank you for bringing awareness..( I got nerve blocks right away.The Drs found my illness right after they took my cast off.It was like I crushed it that day.Then my world turned upside down..I have tried so many things....I'm on so many meds.I hate having this monster of illness.....You have a very caring family ( brother) your lucky that way...Take Care

[@kristioen7866]

Lisa, so sorry about what you are going through. I understand as I have been there too. Laying in bed trying so many different things being on so many different meds - CRPS controlled my life for 31 years, but it doesn't anymore. There is hope.

[@lisagreig2003]

Kristi Oen - CRPS Conqueror , hello Kristi , thank you for reaching out to me..31 yrs wow!!! Your a strong person..Have you found a treatment or a method that has helped you from CRPS..I hope your doing well..Take Care 😍

[@kristioen7866]

@@lisagreig2003 I have discovered a method that saved me. You can read about my story here, it has my contact info in it too. Hope you have a great day rsds.org/crps-conqueror-story/

[@doublehelix1185]

@Lisa, I made a huge orange bow and its been on my door for years! I am bedridden as well. I cant sit for longer than an hour.

[@janicehilaski-roberts9873]

Lisa, I'm in the same boat you are. I dont know what I ever did to deserve this!

[@KrisQBeeMusudroka-k9g]

❤ 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.

[@rainbowbrite8705]

I have crps this a great informative realistic video about life with crps x

[@maryCCFarm]

this illness is terrible i sound like you.. i have almost full body. the worst for me is the jaw its hard to eat now. and i agree about the car pass i too deal with that and now cannot work anymore . i am so sorry for your pain.. i wish someone could find a cure .. i am fighting for 9 years now.

[@dr.vikasthorat1331]

I wanted to treat u by innovated medicine but I practicing here in India. I have cured such patients in India.Dr.Vikas Thorat what's app no 8652016172.

[@burningnightscrps]

Great video Toby about Sara! I’m sorry to listen to the problems she’s been having with work. If we can be of any help to any of you please don’t hesitate to contact us. Sara kindly did a fundraising event when we first began as a charity and we are certainly extremely grateful of her support. So now it’s our turn if we can help please let us know. - Victoria

[@saradobson4856]

Thank you for all your support over the years! X

[@cpodgorelec]

Adelaide agrees.

[@cpodgorelec]

@@saradobson4856 Hi Sara. May I ask you if you tried Vagus Nerve Stimulation treatment. Sending you lots of good blessings. Your brother did a spectacular job. You are very skilled like your brother and have terrific presentation skills - you could easier do informative workshops to a wide range of audience. Regards Adelaide.

[@AugustPosternack-dg2ks]

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.

[@urgatorb8]

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.

[@mikisboys]

I’ve heard horrible stories about that place, a guy in my support group said it’s a waste of time and money. There just experimenting like all the rest

[@blackhorse11thACR]

Wish you all the best. I have it myself. Horrible disease. 41 operations, disabled veteran. I feel for you. I understand. Unless you have it nobody understands how brutally painful this disease is.

[@QuantumJG90]

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.

[@cpodgorelec]

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

[@garyblackstone3028]

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

[@My_Remedii]

This is so heartbreaking

[@lynnbain4525]

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 !

[@Tillvalhalla603]

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.

[@gwainknight4907]

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.

[@lintonsuttle16]

I have crps so glad to see aware

[@jf-ed2bq]

Hi there im from Sydney and also have CRPS for the past 5 years after a left foot injury at work and my life has been changed alot my pain level varies from 7 to 10 24/7 im waiting for nerve pain stimulator do be done in the coming weeks as im building big hope on it at the moment i hate my life...

[@doublehelix1185]

I am in USA, I have it too. Since March 28, 2002. Surgery caused mine. I eventually had to go from using a walker to a wheelchair. I am sure I know all the feelings you are having. Hang on please, ok? I was without family support a good while and that is awful. I have given up more times than I can remember. Have I been lucky through all these years? Yes and no. Pain that is relentless, screaming so loud so long that an apt neighbor had to move out because she couldnt deal with it. I have become a "hermit". For me life is easier this way. People are so ignorant/stupid, they are clueless!! I hope with all I am that you have great success with pain stimulator! I gave up on all doctors because I learned not to trust the ones in my area. Small towns small minds. I am not a tech savvy woman, but try to let me know how you are doing, if you wish. You will be on my mind. 🐀ps: its in my left foot also.

[@jf-ed2bq]

@@doublehelix1185 Thanks for your support im lucky that my wife and 4 kids are supporting me but i feel bad for them as my youngest twins are 7 years old and they want to spend some quality time with there dad unfortunately I can't do it ...Have you had ketamin infusion cours ?As im going to have that soon the insurance approve it than the nurve stimulator trial and if that help they will implant it permanently...

[@doublehelix1185]

Hi, no I havent had any treatments. But I know from reading others stories that Ketamine is very good. I believe that and the nerve stimulator will improve your life. I am praying for you and your wife and your children. The guilt you feel is disabling enough compounded by the physical pain too. There is a website I used to go to but there were many on medications I havent ever heard of. Some were being given multiple meds, but not really helping them. I only take Lyrica for nerve pain and hate the side effects. At one point Ketamine wasnt legal in the states and people went to Mexico for it. It is legal again. At first I went to many doctors but I heard this too much, "RSD isnt taught in medical school". See my surgery damaged my Sciatic Nerve and have nerve entrapment in my foot and calf. I am a woman without much to lose. You however, have a family to strive for. Its hard and seems impossible a lot I know. I went through personal stages of grief for the first 4 to 5 years. It changed me so much I couldnt stand myself! We have a monster disease. There is something special about you. It is your wife and 4 children!!! Chin up! A change is coming!

[@jf-ed2bq]

@@doublehelix1185 thank you god bless...

[@jf-ed2bq]

@@doublehelix1185I was on lyrica but didn't work with me im on endep 50mg 2 peels at night before bed and pelexia 150mg slow release and pelexia 50mg immediate release...

[@taylakatewilson]

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

[@isabella3025]

In spero clinic you can get remission. Just check out if you can afford it

[@drpremlatasangwan435]

@@isabella3025 hi Isabella,would you like to share your experience of spero clinic.Actualy some people are saying it is frodd .it is not recognised By goverment.please help if you know about it.thank you.

[@isabella3025]

@@drpremlatasangwan435 I just found out abt Spero clinic in facebook ,I can't afford it now ,I talked to a patient from Europe with 13 yaers of crps , she is very happy with the results ,she strongly recommends the place

[@glendamock2041]

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

[@isabella3025]

The hell living in us !!!

[@debdewitt4165]

Thank you

[@nanamtk1479]

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 🎉

[@rontegtmeyer8293]

I also have CRPS-RSD NOW GOING ON 20 YEARS. BIO and NORO FEDBACK helps very much having this is HELL but you know life goes on DAY BY DAY 👌👍

[@drpremlatasangwan435]

In what way biofeedback helps.

[@BrendaCHughes]

Thank you so much for this video, it was nice to hear someone else with the condition. I have had the condition over 7 months now, due to surgery on my foot which was a 1st joint mtp and then had to have it removed. Sometimes it is hard trying to explain to people what you are going through as they do not understand the condition and do not realise how much pain you can be in. At the moment I am due to have more surgery to have my big toe fused instead since the first operation did not go according to plan. I have been warned that it will make my crps even worse. I too have tried all sorts of medication and none seem to suit me, so at the moment do not take anything. The worse thing is that I work for the NHS as well on a heavy ward and cannot go back to my normal duties due to what has happened. So still currently off work. I live one day at a time, I have good days and bad days and do not get much sleep. Trying to describe the pain can be hard, even just having certain types of clothes on make it worse, even the quilt at night time which I cannot have on. But hopefully they will find a cure or even better treatment.

[@futureofhealthforlife]

You guys should check our film on crps, its on our youtube page, do enjoy.

[@jamesanton3000]

little one never have any surgery without ketamine look up dr. Getson from NJ he was my doctor after seeing Swartzman from Philadelphia they were the top crps doctors for along time. I’ve had it in my legs first one then both I’ve had over 30 nerve blocks and got low dose ketamine treatments been on strong pain killers for almost 10 years now I’ve got some problems sleeping I don’t get more than 1 hour at a time and I’m getting fat well my gut is sticking out and the pain is still there I don’t wear shoes at all because they cause the redness and burning sometimes i use a cane but haven’t been for a while now I wish it would just go away but oh well. I had no injuries to cause it so it seemed crazy to me that things hurt

[@marygillman3831]

@@jamesanton3000 So sorry, James. I was told that Medicare will not pay for ketamine.

[@karennuzman5891]

I to have CRPS started in right foot and ankles it has now spread up to my hip on my right leg and now in left foot up to my knee. I had 47 surgeries none for CRPS. I have a stimulator implanted in my back to try to lessen the pain ive had nerve blocks 1 per month for the past 5 years my insurance does not cover ketamine and with the opioid scare my doctor is cutting my pain meds down where now I have a hard time just to get out of bed I now dont have quality of life. I cant live like this any more what am I to do???

[@serinadelmar6012]

little one check out the new CRPS guidelines from the Royal College of physicians, they include advice for surgery. In terms of surgery it really is crucial to have Ketamine, as this is an NMDA antagonist, alternatively a 30 day course with minocycline can really help reduce the chance of spreading (off label use, reduces GABA). It is so hard trying to explain I agree, wishing you all the best 💗

[@serinadelmar6012]

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 ♥️

[@isabellaharris1192]

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. 🥺

[@nataliekhalilrealtor]

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?

[@genericamerican7574]

Thanks Toby and Sara. I want to look normal as possible too. No one sees you suffer. I don't want people see me suffer. I want to work and be needed. I know what you feel Sara. I had a great occupational therapist. I had a stereo in my room when I first met her. When I tried to turn it off she said that I can leave it playing and song came on bye Nina Simone called feeling good. She'd never heard it and she immediately looked it up on her phone and downloaded it. I hope you know this song or maybe listen to it once. Maybe play it for one of your clients having a hard time. Music helps a lot. I had a brain tumor in my spinal cord. It was over eight inches long. Then I had MRSA and my spinal fluid. After two spinal surgeries I was in bad shape. I was told I would never walk again they thought I was going to be a quadriplegic like Christopher Reeves. I told them I would walk again and walk again I did it wasn't easy. It took years. I had many people help take care of me. I am very grateful for each and everyone that was patient with me. I know where I would be without them. Much love everybody.

[@marygillman3831]

So very sorry. I'm right there with you. I was diagnosed about one month ago with CRPS, about 3.5 months post -surgery ankle repair and fusion on 11/15/18. Early intervention is mentioned regularly, but what is to be done? I've been diagnosed, have received my annual allotment (2 months) of physical therapy (via Medicare) and have been put on a variety of drugs. Now what? Any ideas?

[@hannah9513]

Mary Gillman, I was also lucky enough to have an early intervention. My physical therapy helped greatly, but I think my mental health was extremely important. I had to decide that I could beat it and shut it down. I hope you are doing well today!

[@sundaysommers1476]

I had it in a leg Nd foot for 27 years. I couldn’t walk or wear shoes. I used crutches and a wheelchair. A year ago I had surgery by a chronic pain focused peripheral nerve surgeon and it changed my life. He disconnected the damaged nerve that was causing my symptoms. I now live a normal life without medication. See my video: CRPS PAIN GONE AFTER 27 YEARS and BEATING CRPS.

[@marcusaurelius2242]

The Spero Clinic in Fayetteville, Arkansas.

[@rainbowbrite8705]

In addition, I would like to say that I got my CRPS diagnosis within 8 weeks of my original injury and it didn’t stop it spreading or progressing.

[@marygillman3831]

I am so sorry. I am sorry for each and every one of us. My diagnosis came at 4.5 months post-op arthritic repair/fusion of my ankle, but i'm still wondering why it's so important to be diagnosed early. What next?

[@serinadelmar6012]

Mary Gillman because the pain is still sympathetically independent, i.e. not centralised, this gives you an opportunity for remission, or rather, a far greater chance of remission. If I was in your position I would definitely look at biophosphates (There are infusions that you can have in Italy), also keep a routine of ever so gentle movement, Aqua physio is really good because Thermo neutral water (34°C) massively reduces allodynia enabling you to exercise gently in a bath or warm swimming pool. The hardest thing is when it passes the point of being able to move it at all, or indeed if it spreads. Keep as calm as possible, as this helps the nervous system too. Praying for your remission with every ounce of my being, no one deserves to live with this. 💗

[@janabanerjee4066]

I had it when I was 11 but I beat it

[@bryantfrazer5670]

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

[@genericamerican7574]

4:50 McGill pain index

[@rosellebn]

I also was diagnosed with CRPS

[@Bengamingchannel]

I had a football accident when I was 11 years old, over the years I just kept on having more damage to the wrist/arm, in total I have broken my wrist 17 times in 12 years, I got diagnosed in 2009, I am at the point with my CRPS pain that I don't know what to do now. I have had so many operations, they even took out my pain nerve in the arm to see if that would help but just made it a lot worse. I was considering asking my Doctor about arm amputation.. should I? Because I am only 22 years old, I want to do so much with my life and this is stopping me from doing so.

[@serinadelmar6012]

No, please don't. It can not only cause spreading but once the CRPS pain is centralised, i.e. in the central nervous system, it will continue to cause pain, often worse in the CRPS amputees I know. Balance rest and pacing, calm the sympathetic nervous system and only immobilise in flares, movement is so important but gentle, slow increases to and a flare. My Heart's with you. It's a monster of a disease. Add PEA and CBD to your regime too. Relaxation is so important too. 💕

[@mercy3219]

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!

[@sxphiesgrave]

I have crps on my left foot. I got surgery on it. It hurts living in pain but I manage it. I’m so proud of her ❤️

[@Star5dg]

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

[@oliversparks1459]

Me to in my Right Hand Thumb 1800mg Gabapentin Not Working Thanks for Sharing this

[@gregbisesi9966]

Oliver Sparks Oliver my wife has CRPS and tried a supplement you can order off the internet called Normast. She says she’s gotten way more relief from Normast than the 1200mg of the rat poison gabapentin. It took her 2 months to wean off the gaba. A months supply of the supplement runs about $30. We’re in Italy for a second round of Neridronate. We’re so close to remission we’re hoping the second round will do it. Try the Normast and stay active. My wife is so close to beating this curse of a disease. Best wishes and prayers to you.

[@oneleggedwonder1]

I had CRPS in my left foot as was in so pain so took a tough decision at age 21 to have my left foot amputated now 12 year on I think CRPS is back and in my right hand but I can't be 100% sure I just hope I'm wrong tho

[@paul3697]

Do you have it again?

[@ventingandmore34]

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

[@maryCCFarm]

great video but with my crps i cannot stand the music it bothers me its like it raises my anxiety.

[@futureofhealthforlife]

can we be positive for the others that it does not bother

[@thevind1cator964]

Stick to your routines. Bad things happen when you don't. I've had mine since the age of 12, I'm now 42. You sound how I did at 30 till I broke routine and tried something different. Now I'm pretty much a prisoner in my own room. STICK TO YOUR ROUTINES

[@santanajordane8564]

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

[@TropicLightning-]

:( I wish it would stop.

[@jacobsfirstweedgrow894]

I'm August 14th 1989

[@bradr1913]

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.

[@ventingandmore34]

my daughter has crps i understand

[@ventingandmore34]

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

[@pattymedellin7005]

Hi I speak little English but I tried to tell you I live in Houston I'm from Mexico and I have some problem like you but I spend a lot of money with the doctors and creams and lotion or whatever but when my sister come to my house to leave in Mexico and Gigi and me want cream Mexican cream like how my grandma use is to all the creme but you look too so no meat market Mexican Mexican market you only need by la campana is the best game he only pay like a $4 for the big is good I promise you and I want God bless you

[@daramara3700]

Read abaut LDN low dose naltrexone.🐞

[@91Tribual]

Elaborate, please.

[@ams3344]

Joakim YesMan a lot of doctors prescribe this for pain google it 💗

[@sharonbrown5702]

Hi Generic American for Sharon brown xx

[@sharonbrown5702]

Not to good today my arm is very painful hope you’re having a good dayxxx

[@ErikS-]

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)

[@saradobson4856]

Thank you for your very unkind comment on my looks. This just shows everyone that you are a bully and you are just as bad if not worse than the people who comment on my disability. For your information I am short sighted. I do need to wear glasses but I can also where contact lenses when I want... I'm not sure why you think my face would need to be distorted due to having to wear correctional glasses. There are many different prescriptions so not all are very strong. I'm guessing you must not wear glasses as otherwise you wouldn't make such an insensitive comment? Also I'm not quite sure why you had to make such an unrelated comment unless you get thrills from trying to upset people? Please be kind to others, not everyone can put up with nasty people like you.

[@bballjj18]

@Sara Dobson i think the glasses look great sara! We share the same birthday btw (im august 18 of 1993). As a chronic nerve pain sufferer myself, i pray that with the advancement in medical procedures and AI that we might have working treatment sometime in the future. Stay strong!