Living with CRPS: Beth Seickel's Triumphal Story - RSDSA

Beth Seickel, BSN, is an Emergency Department Nurse and a person with CRPS living in Long Island, NY. Nurse Beth discusses her journey living with CRPS with a special emphasis on how to prepare for medical appointments, visits to hospitals, and how to assemble a toolbox for travel and unexpected situations.
View the slides for this presentation here: bit.ly/36Z28Rp
To learn more about complex regional pain syndrome (CRPS) and reflex sympathetic dystrophy (RSD), visit Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)’s website at rsds.org. #RSDSA #CRPS #RSD

[@vashtiramsaroop5410]

This was incredibly helpful! ❤ My only request would have been to see the images on the screen that she was referring to. Thank you for taking the time to post this! 😊

[@messycrafterstoo884]

Thank you Beth for sharing your story. I teach in the nurse practitioner program and after years of crying with pain someone finally identified CRPS. I'm still researching all of the treatment modalities and hopefully will find something that will allow me to live an almost normal life. Hugs

[@RSDSA]

May I send you some information about non-opiate medication options? If yes, please email me at [e-mail]. I will also share you message with Nurse Beth.

[@RSDSA]

Messy, if you email us at [e-mail], I will share Nurse Beth's email

[@florencedonald6419]

4 years ago I was suffering with CRPS and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about an herbalist preparing herbal medicines to cure everything type of diseases. Including CRPS , at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CRPS and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. , gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 1 months of use, I am now free from CRPS , all thanks to Dr. Joshua Ighalo. You can also contact this great herbalist for help by email: [e-mail] or contact Dr. through his whats-app: [phone] They also specialize in the treatment of all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.

[@staceyshaffer180]

You just told my story to a tee. Thank you from Seattle Wa. I was diagnosed with CRPS in April of 2018, a year and a half after a fall which shattered my wrist and hand. It’s the most debilitating disease ever. You’ve described everything I’ve been through, it’s good to know I’m not the only one. 💕

[@RSDSA]

I'm forwarding your email to Nurse Beth

[@bethseickel4024]

You are absolutely NOT alone. I hope this was helpful as it was challenging presenting in December *super cold, windy day....Yikes. If I can be of any assistance please reach out to Jim Broatch at RSDSA. He knows me very well and can share my contact info.

[@florencedonald6419]

@@bethseickel4024 That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently

[@florencedonald6419]

@@bethseickel4024 4 years ago I was suffering with CRPS and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about an herbalist preparing herbal medicines to cure everything type of diseases. Including CRPS , at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CRPS and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. , gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 1 months of use, I am now free from CRPS , all thanks to Dr. Joshua Ighalo. You can also contact this great herbalist for help by email: [e-mail] or contact Dr. through his whats-app: [phone] They also specialize in the treatment of all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.

[@judyforan2542]

Nurse Beth going to the ER is a nightmare. I have a medical alert bracelet and even with that I have issues. Thanks for giving us some of your tool kit to enable us to handle our situations a little easier.

[@RSDSA]

Judy, what is your bracelet and what is the cost? We're investigating MedicAlert's Advantage plus plan. Thanks

[@bethseickel4024]

My pleasure. I hope it helps...Hard for a nurse to be a patient

[@bryanwilliams3524]

I was thinking 🤔 of that. Hope you’re ok.

[@jasonrichter497]

Thank you for your story. You really seem brave, strong and smart enough to help others with their struggles. So much of what you said rang true for me as well. Living with CRPS only SEEMS impossible, like climbing Mount Everest. One step at a time. The best thing for me is laughter. Thanks again!

[@bethseickel4024]

sorry just seeing this know. So glad it was helpful

[@brentwhite1826]

Nurse Beth is very visual. Her words. I Would love to see the slides. I will watch again. Thank you.

[@RSDSA]

rsds.org/wp-content/uploads/2017/12/Nurse-Beth’s-Toolkit-Managing-CRPS-Flares-dec-8-2017.pdf

[@RSDSA]

rsds.org/wp-content/uploads/2017/12/Nurse-Beth’s-Toolkit-Managing-CRPS-Flares-dec-8-2017.pdf

[@kristenjawor-brady8491]

Good job hun! Thank you for saying it for us all

[@lindasplaylist100]

Thank you all so much! But especially the nurse. I am also a nurse. It is easier being a care giver than a pt.

[@serinadelmar6012]

Thank you 😊 I always learn so much from your videos. ❤️

[@RSDSA]

Thanks for the love, Serina!

[@magdalenadivic5329]

@@RSDSA can you give me you email...i would like to ask you some quwstion...a im soo ill, i dont have anyone😥

[@heidibeilstein6459]

Hi Beth. I am a BSN of 16 years and a pain patient and in school for Oriental Medicine please watch below link.

[@florencedonald6419]

That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently

[@florencedonald6419]

4 years ago I was suffering with CRPS and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about an herbalist preparing herbal medicines to cure everything type of diseases. Including CRPS , at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CRPS and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. , gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 1 months of use, I am now free from CRPS , all thanks to Dr. Joshua Ighalo. You can also contact this great herbalist for help by email: [e-mail] or contact Dr. through his whats-app: [phone] They also specialize in the treatment of all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.

[@mamamode1312]

When I have a very full day, I get home have my shower, then put up my feet. Thing is if there is a draft warm or cold it's painful. The air moving over my skin hurts. Then the times come when both are the way, the air moving hurts, but to cover with even a sheet hurts. So, I need to choose which is painful sensation I'm going to endure the moving air or the sheet.

[@susannaanderson1680]

Great presentation! Thank you for volunteering and helping others with CRPS/RSDSA.

[@bethseickel4024]

If it helps just one person, it is all worth it.......Thanks Susanna

[@AmethystWoman]

@@bethseickel4024 I found your email address on your PowerPoint. I hope it's ok to contact you. Our stories are so similar - on the job nursing injury, left leg, spread to right etc. I'm on LDN. Im afraid of ketamine but have been offered to be a part of a free study in my state. I have several questions. I have had horrible experiences inpt. There needs to be info about what to do inpt if you can't get your needs met - I had to almost call 911 once to get a nurse to come to my room post knee replacement. Did you know that if you have a nerve block pre-op on limb surgery, it will prevent the pain pathway to your brain from being formed and you can't get RSD (or have it spread!) Thank you for this presentation. I'm a 40 year "survivor" not surviving so well. Nurses hate being patients and we are not very patient when we know things are being done wrong and can't get ourselves heard. I often think of those who are AFRAID of doctors if it's hard for us who aren't!

[@kristioen7866]

@@bethseickel4024 Thank you Beth for doing this.

[@kristioen7866]

@@AmethystWoman I refused a seven day ketamine coma and that was when I had to take my health into my own hands and God's. Thankfully he provided and I found what I needed to stop my CRPS.

[@bethseickel4024]

@@kristioen7866 my pleasure. I too would NOT do the 7 day ketamine coma, but have learned alot about ketamine in different forms that has been helpful, but as I'm sure we all know, there isn't 1 fix, it's a combination of things.....but can be done for sure.Don't give up

[@maryellenbarratt6515]

AGAIN NO SLIDES ?????? Can't see the toolkit ! so please consider putting the slides on the presentations !

[@RSDSA]

Hello Mary Ellen. Thanks for the comment. We have the slides for all of our presentations on the RSDSA website here: rsds.org/educational-presentations. We did go through and edit the captions for most of our KZbin videos to include direct links, but it looks like we missed a few. Thanks for pointing that out for us.

[@sherrykoury4557]

Wow it's so good to hear someone else's story that resembles mine so closely. I can't believe what she said because it's me. . I turned blue, red and shiny I swell up like my hands look like Mickey mouse hands. I can't decide sometimes whether I'm burning up or cold because my skin will be dead and feel like it's either cold or really really hot at the same time, sometimes I'm not even sure which. It's just my arms are dead but the pain is excruciating. Constantly looking for softer sheets that I can use cuz my skin is so sensitive.

[@marcusaurelius2242]

I wonder how she is doing now?

[@JohnRambo1947-July-6th]

Try hyperbaric oxygen therapy. I have heard amazing things about it. This world is truly messed up how people treat other people without knowing or asking.

[@RSDSA]

Thanks for the suggestion, John!

[@JohnRambo1947-July-6th]

@@RSDSA you are welcome

[@luke144]

This world is a sad, sad place for people that have this disease. Nurses have said VERY cold and hateful things to me. Imagine crawling through hell everyday, not sure if you're strong enough for the next day, then have someone tell you you are faking it. I'm a grown man and I cry myself to sleep often!

[@TheDimachaerus]

@@luke144 have you looked into the Spero Clinic? I don't know your situation but they seem like the only place that gives people with CRPS a legit shot at remission or pain reduction.

[@luke144]

@@TheDimachaerus I'm checking it out. THANK YOU for the info!

[@sharonrobertson9062]

I wish we could see your pictures. I'm wondering what that trellis look on skin is, etc. Are they available anywhere else?

[@RSDSA]

Hello, Sharon. The link to the slides can be found here: bit.ly/36Z28Rp. Presentation links can be found in each video description if you need them!

[@nonninaavallone2531]

This is very informative but I’m very upset that I cannot see her slideshow. So things that she mentions that may help me I cannot see.

[@nateone6632]

At my worst I'd cry in the car.. Man i don't even need to start explaining... She said it all

[@bethseickel4024]

You are NOT alone at all. Nurse Beth too has cried, but I have worked hard to learn about Glial cells and NMDA receptors to find medications to support that which causes so much suffering with CRPS. LDN (low dose naltrexone) in liquid has made it better, as does ketamine troches *sublingual, and the tons of other meds I take to re-nourish our over active nervous and immune system along with Dr. Chopra

[@bethseickel4024]

I'm so glad this was helpful. It was challenging to do in December, but RSDSA was so helpful to me, it's my pleasure to give back. You're NOT alone. I'm in a better place know then I was years ago.

[@BellaDolce]

Where can I find the slides?

[@RSDSA]

rsds.org/wp-content/uploads/2017/12/Nurse-Beth’s-Toolkit-Managing-CRPS-Flares-dec-8-2017.pdf

[@RSDSA]

rsds.org/wp-content/uploads/2017/12/Nurse-Beth’s-Toolkit-Managing-CRPS-Flares-dec-8-2017.pdf

[@florencedonald6419]

4 years ago I was suffering with CRPS and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about an herbalist preparing herbal medicines to cure everything type of diseases. Including CRPS , at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CRPS and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. , gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 1 months of use, I am now free from CRPS , all thanks to Dr. Joshua Ighalo. You can also contact this great herbalist for help by email: [e-mail] or contact Dr. through his whats-app: [phone] They also specialize in the treatment of all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.

[@christianfrovinlorentzen3851]

CRPS II in Denmark

[@claus1225]

Does anyone have CRPS that originated from the back muscles, armpit or rib cage? Thanks.

[@RSDSA]

I don't think we've had anyone experience this *recently*, Roger. We find that most Warriors typically have an injury in an extremity first.

[@girlwhosbeenthroughalot4997]

I really need some guidance. . Thank you so much for the utubes. Can someone please reach out if they can. I've been on this path since 07.. 11 years almost 12 plus still wish I had a better team care. Thank u for validating that it takes forever to get help.

[@RSDSA]

please email me at [e-mail] and we can talk/communicate

[@kristioen7866]

As a girl who has also been through a lot I would love to help you. CRPS controlled my life for 31 years and now it doesn't. I am free of doctors and living my life again

[@RSDSA]

Kristi, just saw your posting. Would you like to share your story on our blog? rsds.org/blog/ Best of health, Jim Broatch

[@girlwhosbeenthroughalot4997]

@@kristioen7866 hello dear, I am very interested in learning your story. Thank you so very much!

[@girlwhosbeenthroughalot4997]

@@RSDSA thank you so very much rsdaofamerica. Its been a horrible month . I just seen your reply.

[@attheranch873]

It would’ve helped if I could’ve seen the slide she was putting up.

[@RSDSA]

You can view her slides here: bit.ly/36Z28Rp

[@Somuchfalsehistory]

Low income people are ignored , they see my meds and send me home from emergency or urgent care ! Even my pain doc ignores and my PC they want to send me to multiple docs for other things my insurance covers them docs care less 2 have told me it is a fake syndrome no such thing , so I told myself it is just pain sensors in my head. Well as l lay here wondering how I can even send these comments I know I am failing.

[@bethseickel4024]

You are NOT imaging this at all. It is a real medical condition with many peer to peer research literature validating CRPS. Reach out to RSDSA and Jim Broatch as he knows me very well. If I can assist or support you, nurse Beth is here

[@paulcunnane4]

This Jim guy sounds like a typical con man. I hope I'm wrong.

[@paradise6606]

I can't see her slide show. It would be better to watch the slide show and not her talking. We can listen still .

[@RSDSA]

rsds.org/wp-content/uploads/2017/12/Nurse-Beth’s-Toolkit-Managing-CRPS-Flares-dec-8-2017.pdf

[@bethseickel4024]

rsds.org/wp-content/uploads/2017/12/Nurse-Beth%E2%80%99s-Toolkit-Managing-CRPS-Flares-dec-8-2017.pdf Sorry for the delay, but the slides are posted on RSDSA Educational Presentations from Dec 2017 hope this helps all

[@mlfncookies]

@@RSDSA It says to download something when I click the link but it won't download. Can you make a video with a slideshow of the pics?

[@nateone6632]

I remember this kid telling me he understood my pain... He said "well i tore a bunch of ligaments in my leg and so i understand your pain" this is one of those kids who thinks he so nice but really creeps everyone out and no one likes... And he can't take a hint especially from girls and especially when people wanted him to stop talking... I've never been so close to fighting at work... He wouldn't give it up... How can anyone think (even without an understanding of chronic pain) think that an acute injury is worse than something you live with 24/7 and may never go away? Lol

[@jasonrichter497]

Everyone knows what regular pain is. No one without chronic pain, knows our pain. Had to hear the same BS from my own mother.

[@bethseickel4024]

Pain is a funny word and people relate to the most painful experience they have had to understand others pain, which for those of us with chronic pain knows doesn't equate at all. Again, educating community is key

[@mamamode1312]

Well meaning hearts that are blessed not having extreme unexplicable pain. The whole silly pain scale of 1-10. That doesn't even touch like hello in full out flare multiple areas of my body are in 35. Not 3.5 actually, thirty-five. Can I get an Amen? Sure, I can. Folks here are in the same boat, or love someone who is.

[@Somuchfalsehistory]

Wonder if you have no help.

[@florencedonald6419]

That's so sad to hear you are still suffering from this same situation . Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same situation , He can also help cure yours permanently

[@florencedonald6419]

4 years ago I was suffering with CRPS and I have tried everything I could to heal myself, but it was all to no avail, until I saw a post on a health forum about an herbalist preparing herbal medicines to cure everything type of diseases. Including CRPS , at first I doubted it was real, but decided to give it a try, when I contacted this herbalist through his email and he prepared me a herbal cure for CRPS and sent it to me via the delivery service of UPS from the company, when I received this herbal cure. , gave me step by step instructions on how to apply it, when I applied it according to the instructions I was totally cured of this deadly disease within 1 months of use, I am now free from CRPS , all thanks to Dr. Joshua Ighalo. You can also contact this great herbalist for help by email: [e-mail] or contact Dr. through his whats-app: [phone] They also specialize in the treatment of all kinds of diseases, VIRUS HERPES , HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE.

[@paulcunnane4]

@@florencedonald6419 You sound like a liar to me. Have you no shame?

[@bryanwilliams3524]

Some people are sending me. Fake. Cures that so terrible to pray on the sick. Stop 🛑 it.

[@RSDSA]

We hope people will stop sending those to you!

[@paulcunnane4]

Report these monsters to anyone who will listen. This Jim guy sounds like a typical con man.