Lyla's Battle with (CRPS) Complex Regional Pain Syndrome

[@vickiwaatti1076]

I have CRPS and i am 47. I could not even fathom having it at such a young age. Prayers going up for this young woman and her family.

[@michellesirois6954]

Same here...im 53 and have had it for the past 2 yrs and 8 months.Poor kid.😢

[@rosanneschwab4996]

I had CRPS in my foot/leg after an injury to my ankle. The pain day and night cannot be described in words. Only relief was sleep. It's all about early treatment, within the first few months after symptoms I had 6 spinal blocks within that time frame. After almost 2 years of PT , am over 90% recovered. Occasional discomfort, but nothing to speak of. I did this all as an outpatient, and luckily my insurance covered most.

[@TravisCheddar]

I'm so happy to hear you're 90% recovered and could get the treatment you needed and deserved! Thanks for your comments!

[@Serenity_1127]

Hello, my daughter just got diagnosed with CRPS. I don’t know much about this syndrome and I think I’m going crazy just reading about it and watching videos. You gave me hope that my daughter would get better.

[@cocopufer5667]

Thank you for posting, more MUCH more awareness needs to circulate about CRPS. My daughter has stage 3 crps and its awful. No cure, hardly any doctors know anything about it. When we go to the er out of desperation, when her body is on fire, we have to bring our own info on this monster with us. They did not catch my daughters case in time so it has progressed so far, so i am VERY glad this little kid has hope though this campaign. With CRPS its the little things that make all the difference in the world.

[@TravisCheddar]

Thank you and I'm so sorry for you and your daughter. I wish you nothing but the best and I also hope that CRPS becomes more well-known!

[@Springwaterpixi]

My Heart sincerely goes out to your daughter. I also have crps 3. I'm praying for your family. I have not found answers but no child should suffer this God awful condition. 😪🙏🧡

[@cocopufer5667]

@@Springwaterpixi ya its tough we are fighting every day. it keeps spreading and is in her stomach, and chest walls now. doctors out here in the west are pretty clueless we are seeing the "best" neuro in the state. at this point its just pain midigation and trying to figure out how to get to the east coast - theres a clinic in alabama i think that specializes in it but its crazy expensive and very backed up so we will see. Keep your spirits up! thats what we are doing!

[@mzladyteerolla5218]

I'm really praying for your babygirl because I can't even imagine the toll this is taking on someone so young body. I just starting dealing with this myself a little over a year ago, the pain is unbearable; especially when it rains or the temperature drops is when I notice it's worse. I have times where my shoulders and elbows feel broken and I can't even lift my upper body up in the morning and the doctors have a nonchalant approach to this. It does make you not want to even exist sometimes, I'm still trying to get help from doctors with this because it's gotten worse. She's in my prayers and I pray God grants her mercy. Thanks for sharing

[@cocopufer5667]

@@mzladyteerolla5218 Thank you for the prayers, I will also pray for you. Temperature changes are really tough, right now she its attacking her chest and neck and she cannot even take a full breath. However we are in good spirits, we are learning that state of mind is the best medicine. We did get an appointment with the cleveland clinic coming up this may, really though I just hope more awareness for this monster gets out. The crps community is pretty good at supporting each other and thats been really helpful. Hang in there and live in the moments when the pain subsides, I hope you find joy in the little things and keep up hope!

[@TravisCheddar]

Lyla and her wonderful family all thank you for taking the time to watch and/or share this video!

[@Moseslife]

You are welcome

[@bethanypope5879]

Seeing her pain is heartbreaking. As someone dealing with this at 20 years old I couldn’t even imagine the strength she has to deal with this so young.

[@trinitywelch2789]

I was part of that program. I hope that Lyla will be able to get some level of help through it as I did. You are a brave warrior in your journey Lyla and I hope that your journey will become better over time.

[@shaynetrimble5192]

oh i love lyla i have crps too and we met at a camp for kids and their families who suffer with chronic pain and we have become friends i love these videos about her because when we met (just a few months ago) i didn't know she went viral she's doing much better and she has given me glimpse of hope that i too might be able to walk unassisted one day

[@KarenCampbell-qh1xt]

Praying for her as I have full body CRPS and can’t imagine a poor child going through this. Gentle warm water exercises are best.. don’t overdo because anything done is felt the next hour or day and you need to recover. Dr Phillip Getson in New Jersey has very informative videos on KZbin and speaks at the RSDSA conventions. He was one of the first to do ketamine and is a believer in as little medication as possible. Pain meds are usually a must. Teach her about God and he will watch over her on her journey always. God gives us the strength only he can give.

[@VikkiCorowa]

Your inclusion of God is so true. He honestly is my only comfort. People don't understand what CRPS is like. I could only explain it as labour and child birth but those end and generally with a happy ending ❤ God Bless

[@Ndfourlife]

Why doesn’t God take it away? It makes no sense for a loving God to have people and especially children deal with situations like this.

[@VikkiCorowa]

@Ndfourlife I don't understand it all, but what I do know is that Jesus was whipped, beaten brutally, and hung on a cross, paying for not just sin, but sickness and death over 2000 years ago. Does that mean we don't die because He conquered death? No. So I guess the same is with sickness. We still get sick, but my promise is that He paid for my healing. Just like sin, we still sin and mess up. Does that mean He didn’t set us free from sin? No. Rather, He paid the fine so to speak so we don't have to live under the bondage of sickness, death and sin. Hope that makes some sense 🙏🏽 😊

[@CaponeCabin]

I have CRPS, God bless this little girl..... I absolutely feel you, the pain makes you not want to live.... but you have to keep pushing through

[@melissadoesmakeup]

I am so sorry Lyla that you are going through this, CRPS is really tough. I have the same condition. Some days are sunnier than others. Stick in there for the bright ones they come when you least expect it! You are strong. You are beautiful. You are a fighter and you will need to learn things differently. Thank you for sharing your story and bringing awareness to the cost of insurance as well as the issues with insurance not covering these cases. The underwriters and insurance world does not understand a day of what a day their denial of treatment for one of the most painful conditions. Thank you to your family for being there for you, behind and beside you. It's important. I have been waiting on an insurance claim for over 2 years with this. Keep fighting. I am 32 and it's not easy. You are a strong young lady and thank you for creating this video and for your loving heart. Financial struggles are so real in this and the stress it puts on family and mental health is as well. I'm praying for you Lyla . All the best!!

[@TravisCheddar]

This is so sweet, thank you! I'm very sorry for your struggles with both CRPS and insurance.

[@daisyviner5483]

I was diagnosed with crps when I was 11 and right this minute I am in so much pain. I’m now 16 and I hope Lyla is a bit better now. x

[@sarahkay3602]

Lyla you are a CRPS warrior. Stay positive and keep strong 💪 . You’re amazing and have incredible parents and loving 🥰 family. I share and understand your pain as we walk through this journey. With hard work we will G-D willing will get to remission. Bless you. Praying for Lyla and all CRPS warriors find relief

[@jenniferwashick6879]

I was diagnosed 22 years ago with Complex Regional Pain Syndrome and it started after what I thought was a sprained ankle and within 1 month it spread to my other foot so I was in a wheelchair then it spread to both of my arms and my head I couldn’t hold a fork and my nurse had to use pillows to hold covers up because I couldn’t be in the wheelchair anymore so I laid in bed screaming every day and night I had my friends and nurses go online constantly looking for a cure I found one case of remission in a man from the UK He only had it in his hand but I was desperate He used a Hyperbaric oxygen chamber in his home daily so I bought one and within 2 weeks I was walking with my wheelchair and I pushed it out the back door and used the walls to lean against I still am not 100% but I can walk and swim It’s the main thing that keeps my pain under control I truly couldn’t live without it I was so sure of it I went to school to become a Hyperbaric technologist when I could barely walk and just started driving again I have treated so many people with this disease and other conditions Everyone is blown away by how much better they got in such a short time A woman who couldn’t walk on one foot wanted to go to the beach She couldn’t believe after 3 treatments we walked on the beach and she cried If you get a stroke victim in within the hour it’s as if they never had a stroke It takes away bruising and cuts overnight Athletes use it Prize horses are put in hyperbaric trailers before they race because it legally dopes them and super charges them after they race they are hosed down and put back in the Hyperbaric trailers so it prevents heart attacks like athletes do also If your in pain it takes about two weeks of going in daily then you can switch to a less aggressive maintenance program like 3 treatments a week Because it’s expensive I highly recommend owning one I use Oxyhealth because when you want to get a new one they give you a huge discount with a trade in If you go to a clinic try to negotiate for 85$ per treatment That’s usually the lowest they will go Always ask them to lower the price because you have not been able to work and when you do get back to work BUY A chamber because you will need it for the rest of your life 🙏🏽❤️

[@ilenemorris8285]

It's so heartbreaking to hear about someone so young with this. I have it and the pain is unbearable. My prayers for her

[@88pjtink]

200K cases isn't actually considered "very rare". But rather just "rare". And it is incredibly underdiagnosed, which means there are likely closer to 300K cases. Consider that ALS IS very rare, and there are about 10K cases nationwide. And yet nearly everyone knows about it! The lack of awareness of this condition is totally stunning. I know. I have suffered it for over eight years. and it took them 3.25 years to get a proper diagnosis. PLUS, there is NO TREATMENT PROTOCOL for it. We simply get sent home to suffer. And people wonder wy we have suicidal thoughts (on a regular basis. Which is entirely normal for CRPS patients, by the way.). Thank you hugely for posting this video. This is very difficult to discuss. and to impart just how tough and awful it is with only words.

[@ryleebrawner2191]

This is so cool this is my school teachers daughter and I hope the best for them

[@missyannp36]

I also have CRPS. I've tried literally everything. I did k infusions, dexalog 12, calmar treatment. Not to mention all the meds. Calmar treatment worked the best for me.

[@suzannecrpsinformation5421]

I am so glad that Lyla is getting treatment & I hope it works for her. No child should have to suffer from this horrid disease. The insurance companies are shameful. I have had CRPS for 14 years in both of my legs. PT did help with the desensitization but other than that nerve blocks, ketamine infusions & CBD didn’t work for me. Unfortunately due to the CDC Guidelines I can no longer get the opioids that were the only thing that helped my pain. I wish I could make those people “ walk” a mile in my shoes with CRPS & tell them “Sorry you can’t have any pain medication-suffer”.. This is tragic as people are committing suicide when there are drugs that can help… This isn’t helping “The Suicide Disease” or anybody suffering with chronic pain. Thank you for sharing & adding awareness to this dreadful & rare condition that most have never heard of.

[@VikkiCorowa]

Although I just found this and it's two years ago. How is Lyla now? I have had CRPS Diagnosed too and no one knows about it where I am from either. Thank you for posting out of Love for others

[@barbarajackson2028]

I know where she is coming from! I've had CRPS for @25 years. It started on my left foot and has gone into 3/4 of my body. There DEFINITELY needs to be MORE attention to CRPS!

[@jenniferwashick6879]

Please read my comment above about hyperbaric oxygen chamber for pain 🙏🏽❤️

[@briannayung5694]

So easy to fall in love with Lyla, her family, and you Trav 💙 Donating right now! If you see this comment Lyla, we are your biggest fans! 💙💙💙

[@lannycarpenter-yc1wd]

Lyla, how are you doing now? I se that it has been two years. How I pray you were able to get the help you needed. I also have CRPS in my left foot and leg after an ankle injury. By the time I was correctly diagnosed, my foot and leg were black and the pain was unbelievable. After years of treatment, I am happy to report that I have learned to cope much better with the pain. Between coping skills and a Nevro neurostimulator, I am holding my own without pain medication, which never really worked for me anyway. I still have daily pain, but it’s not screaming at me the way it first did, and I’m much better at ignoring it. How I pray that is true for you as well❤️🙏❤️

[@MD-rd9tf]

Hi Travis! Thanks so much for spreading awareness for CRPS. Also, just one edit on your title - it is COMPLEX Regional Pain Syndrome not Chronic. You have it right in the video just not the title. You’re the best! 🧡

[@TravisCheddar]

OH MY GOD I can't believe I messed that up! Thank you so much for pointing that out!

[@MD-rd9tf]

@@TravisCheddar Lol it’s a common mistake because it IS chronic! :) Thx for the correction doll! 🧡

[@TravisCheddar]

@@MD-rd9tf And thank you!!

[@kathryncryts5537]

💙💙💙 Just Donated. I hope this family gets all the help that they need. Much love.

[@TravisCheddar]

Thanks so much!!

[@kathryncryts5537]

@@TravisCheddar thank YOU! Really appreciate all that you do

[@lisaveart9084]

My son has CRPS. It is killing us all and no treatment has worked so far.

[@kellybrown3090]

I have CRPS. so many people suffer this disease. Quality of care is horrible for us. And we get treated like drug seekers. Much needed medication is not covered by insurance. Pain is like havingnyour bones crushed by a vice grip non stop while being submerged into dry ice. Bones deteriorate. Its awful. In my group im in 4 people have ended their lives in 6 months. I wish therr was more help more recognition. More understanding.

[@TravisCheddar]

That's so awful and I'm so sorry. I hope awareness raises for this exponentially!

[@kellybrown3090]

I do too as well. Its heartbreaking. Especially for kids. Bad enough as an adult but we as an adult we have at least been able to experience normal childhood things. I never knew until this happened to me such physical pain could possibly exist. I hope for a cure for all of us.

[@TravisCheddar]

@@kellybrown3090 I do too!!

[@jenniferrhoades4877]

My son has CRPS 😢and he's struggling 😪

[@ktfelder]

Thank you for creating this.

[@TravisCheddar]

Thank you for watching!!

[@Moseslife]

This really heart ❤ touched because I know what she is going through I also have crps and there is nothing I can do about it also

[@TravisCheddar]

I’m very sorry to hear, Moses. Thank you for your comment 🧡

[@Moseslife]

Respect

[@dreamingofdiamondswithdray4104]

I am 39 years old and I have this in both my legs I hate to see a little girl my daughter's age suffering with this horrible disease. I wish I could afford to help but I am praying for you sweetheart

[@TravisCheddar]

Thank you for the kind words! She actually had something amazing happen where Charlie from The Dream Factory came in and raised the money for her to get treatment! I wish you the best on your journey with CRPS 🧡

[@dreamingofdiamondswithdray4104]

@@TravisCheddar that is amazing I am so glad she is able to get treatment !!!! May I ask what type of treatment she got and if it helped. I am kind of at a standstill with mine as we have tried everything that insurance covers and now we have to start looking beyond those options. but with as much as it costs I would like to find out what types actually have helped people with this so I don't waste my money on things that don't or have less of a chance of helping anyway

[@TravisCheddar]

@@dreamingofdiamondswithdray4104 I'm so sorry I'm not sure what exactly her treatment has involved but if I do find out I'll come back here and let you know!!

[@donnamuller6460]

I learned to walk when I was almost 2, and needed a podiatrist and special shoes. My feet and legs hurt all the time; so much so that until I was 14, my Mom massaged and rubbed my legs all night, every night until dawn. I couldn’t partake in gym class all throughout school, but loved weight training and later became a personal trainer to special needs people such as the extremely elderly and the terminally ill. While working with a client who had psoriatic arthritis, I felt the first lightning bolt of pain shoot up my right arm, which was holding a 25 lb weight over my head with one hand. I walked over to a mat and let it drop. That was in 2004. My CRPS has been several years in each place: right shoulder, left shoulder, right wrist, right foot, left foot. My ears just simply went deaf one day in my 30’s at the same moment tinnitus switched on, and it’s been on ever since. I use 2 canes to walk, but that’s really hard on the wrist that had CRPS. I was kicked out of my GP’s practice where I had been going for 28 YEARS when I told my doc what I had. (Diagnosed at Drexel Pain Clinic; Cleveland Clinic stole my doctor/head guy away) It has long since closed. Nerve blocks (2) took the neuropathy completely away from my right foot, (not something I was seeking) and it just returned. It was particularly awful. I hardly ever mention it because compared to the CRPS, well, it’s like bringing up my PE. I can say that the spinal stimulator helped take the edge off the pain. We took a year to crank it all the way up. The Spinal Stimulator is about as long as a business card but many times thicker. Wires are placed inside your spine

[@jenniferwashick6879]

Please read my comment above about hyperbaric oxygen chamber for pain 🙏🏽❤️

[@lisabaugh7411]

I've had it for 23 years now. It's in both feet and legs. Been in remission for several years now but there's been a few times I thought it was spreading. Thank God that wasn't the case. I just try to keep nerves under control as much as possible. I've had a few flare ups off and on the past few years. Still on gabapentin, muscle relaxers and pain meds. I've been trying to work for past three years now. But also have flare up from fibromyalgia . Still have a lot of allergies to different medications. Still sensitive around areas from where spinal cord stimulator was implanted. I will NEVER recommend that damn thing! After the 5th surgery on it. Wish uns well and stay strong. I know it's easier to say it than fighting this. But there is light at the end of tunnel! I'm still not completely pain free but it's not quite as bad as it once was. I'll keep you in my prayers🙏

[@Katie-vy5rd]

Hi I'm curious if you've ever had the stellate ganglion blocks? I'm newly diagnosed in my hand dominant hand.

[@3kalb538]

Occupational and physical therapy, a pain doctor, and nerve blocks=LIFE CHANGING! Marijuana/CBD is also GREAT! Ketamine infusions are last resort, but those are also an option! A special program sounds amazing, but instead of going to one place for it all, you can get it all with various doctors and therapists. That’s likely why insurance denied it. Have they tried anything local yet? This will take months to years, so you’ll wind up needing a team to tackle this at home anyway. Just wondering (though she deserves the BEST, and this would be a great start!)

[@TravisCheddar]

Thanks for your info! I think they have something really special coming down the pipeline that I don't even fully know about, but it should help a lot!

[@3kalb538]

@@TravisCheddar I can’t wait!!! She seems so deserving of anything positive that comes her way❤️ Thanks for the video!

[@markusexz2320]

As a man with CRPS I couldn't imagine a kid going through this. Does anyone know If she was able to have the procedure? I've had it for 10yrs now my life stopped the day it happened I don't live anymore I just get through the day 😢

[@jerrydarvell6351]

I have crps know for 40 year an it is a monster or dragon the last couple of years it has been hard because some of the meds I can’t take any more because they are doing damage to my kidneys so hang in there

[@vanessalynette8755]

Wow amazing soul

[@jennanicole8208]

Get her to Spero Clinic! Pain clinics don’t always work and can be traumatic. She has a better chance there!

[@TravisCheddar]

Thank you!

[@Katie-vy5rd]

Has anyone had success with stelate ganglion blocks? Please if you don't mind replying to me I go to all these CRPS forums/yt videos and have not heard back from anybody on having the blocks, I'm newly diagnosed in my dominant hand and insurance not paying so considering getting a loan to have the stellate ganglion block but would love to learn if people have had success please comment if you have had it please and thank you in advance!😊

[@vivienneb10]

Actually it’s 77,000 dollars she goes to my school they have earned 116,000 today!

[@TravisCheddar]

I know, it's so great to see all this money coming in!!

[@vivienneb10]

@@TravisCheddar I went to her cookie sale today 50% south county there by the looks of it. We have paid dress down days every Friday

[@TravisCheddar]

@@vivienneb10 I was there too! I couldn't believe the turnout - it was insane!

[@kylajohnson2489]

I hope you see this I will donate and my son has the same thing I know how hard it is so I will donate and he needs a lot of care and by the way he’s I think 10 too so that’s cool and I’m so sorry that you have Too experience that it’s hard with the suicidal words and I hope the best good luck to all and tell her I said this I hope she knows about this

[@TravisCheddar]

Thanks so much!

[@kylajohnson2489]

@@TravisCheddar no worry I hope the best

[@merrydye6826]

What abt scrambler therapy

[@shaunaburton7136]

Good video Travis cheddar

[@TravisCheddar]

Thank you!

[@Mike-mh5rl]

Have you ever looked into urine therapy? “The water of life” by John Armstrong is a good book on the subject