Straight Talk About Everyday Maintenance for CRPS Warriors - RSDSA

[@tammiel3812]

I love you Gracie! 🧡🧡🧡🧡🧡🔥🧊🥊 supporting and a warrior from WI!

[@jeniferbrighton9852]

Thank you for verbally acknowledging that we don’t want to be seen as victims, but survivors instead. It takes a lot of mind and soul to keep this body going. I am a warrior. You uplifted my soul today and gave me a new perspective. Thanks again

[@jimmycrim9020]

I have CRPS for 15 years and it almost went to full body. The only support system I had was me , myself , I and my dog (which I called my shadow because he was always by my side) help my to fight back. This is what my doctor told me he wasn't able to help my anymore nothing helped me get better but it was getting worse. So I was told I would need to figure it out , so I can manage everything the best that I am able too. I do believe pets are miracle workers because he know the exact spot to lick to help bring my pain back down. I think that a pet can help out and probably make the best support. Because they will show you unconditional love no matter what's happening something to think about

[@nicolebenson4517]

So sorry Jimmy. It’s so hard with no community or support system. True faith is tested in these times. So happy you had your loyal beautiful dog. I pray you know God is with you, this isn’t home and it’s not forever.

[@debbliles1069]

Ps. I wish y'all would show the slides!!!!! All if the teaching or info is important! Thanks

[@zouzou6424]

Thanks 👍

[@triciasvejda2996]

Please show the graphics! How can we know what to eat without the graphics?

[@jesus4u277]

My daughter has had CRPS for 8 years. The level of pain that she endures 24/7 is off the pain charts...Her pain level is 30-40--and it is 24/7... Just a light touch on her body causes unbearable pain...even the clothes she wears. How did she get Complex Reginal Pain Syndrome? She sprained her ankle. Then the injury did not heal...it continued to get much worse. Then it began to move up and across her body starting at her foot and moving upwards...until a simple sprained ankle moved on to include both arms, her leg, her system, and even her face. Every doctor that she went to would tell her that they did not know what was causing her problems. There was not very much awareness of CRPS at that time. So as the years came and went, it continued to take over her body, and even the weather caused her pain level to rise. Nothing could touch her body without causing pain...not even a light sheet. She eventually found a doctor who knew exactly what she has... But, sadly by then CRPS had taken over her body and some of her organs. She has had Ketamine infusions which gave her halusinations and fearful visions, but it did give a little temporary relief. There is no cure for CRPS. ONLY some relief for the pain, mostly with pain medications. I hope this has given you some awareness about this extremely painful condition. My suggestion is for you to go on KZbin and search for Complex Reginal Pain Syndrome. May the LORD spare you and your family from ever having this condition.

[@RSDSA]

Thinking of you and your family today, Jean.

[@olgavlabel]

I really hope your daughter is feeling better, from all my heart.

[@fxinvestorinc]

How is your daughter doing now ?

[@mercy3219]

This would be even more useful if the video captured the slides, or the speaker spoke the info she references.

[@debbliles1069]

I've never met someone personally face to face that has CRPS. I am struggling to get threw the day because of the pain so I'm open to anyone who has suggestions! Thank you

[@debbliles1069]

Compleatly understand! If there's ever a time you'd feel up to it I'd be greatful!💛🎗

[@tbbyrd7225]

I have talked to others online but I have never actually met anyone face to face who has RSD/CRPS either. How you find her blog and/or a site where you can see the slides she was showing?

[@dawnpiotter]

tbbyrd she lives in IL. She is a very amazing person.

[@nabelbinyameen1855]

Deadly disease this CRPS💥 thank GOD for my FAMILY so hard day to day night to night.

[@tjay5ash206]

What do I do I have no insurance I had suffered a gunshot wound to the leg that went through twice four holes they say I have crps but I don’t know what to do I’m depressed a lot I feel like there is no end to the pain please someone help me

[@lindacarmelle8333]

I empathize with you! I was diagnosed in June 2021. I do have some help through worker's comp. For me research, research , research.....I view videos from a pain specialist online and implement ideas that I can try for free. My CRPS is still in the hot phase so ice is my modality of choice. Ice can be made in your freezer . No ice ? use anything that carries cold to you.....relief has been found by placing my foot against cool objects,windows in winter, the floor at times, some metal objects etc. Putting my feet up , meditation, deep breathing, peppermint lotion or add oil of peppermint / extract to any lotion you have. Those may help you they may not;I just want to suggest being creative and use the you tube channel you have access to help you. THere are physical therapists online who prepared videos during the pandemic that you can try at home. I'd name some ,but I'm not sure this will post if I add the names. I feel your pain! Some days are so bad because of the weather,or me overdoing it, or weakness in not sticking to my diet etc. But there are options for you. and if your depressed reach out to friends and family or even 800 numbers if needed. Prayer, a foundation of faith was given to me by my family ....that is so huge a release and can be achieved in whatever comfortable position you can manage. My only tools in the beginning was a notebook and pen so I could write notes about everything I learn and draw pictures of figures of therapy exercises. or take notes for future use if there are items I want to buy and try. You can go to the RSDS website and sign up for free to gain access to ideas and people to guide you further. I just recently did that. You can use your phone, tablet, or computer....you'll find their info above. Good Luck and I'll say a prayer for you!

[@mebmom3]

Would have been A LOT BETTER if we could see the SLIDES and be able to get more out of this presentation ! Can't even watch it ,can't understand without the visuals ...

[@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.

[@zouzou6424]

Can you send me name of advocate thanks

[@lindacarmelle8333]

I have the hot type of CRPS.....I love love love cryotherapy! Its not a cure ,but does ease my pain and allow me to have less symptoms so I can do real tangible chores or activities in my own home. I can bake or cook , I can have less pain in the shower , the headaches lessen or disappear, I can do my physical therapy with less pain , the swelling in my gut goes away, and I can sleep at night....among a few choice benefits those are for me. Again it is not a cure ,but the place I found for cryotherapy allowed me to sign up for membership so I could go everyday if I need to. I don't though for now just 1 x per week as I have other modalities and therapies too. In the summer I will try to go 2 or 3x a week since the humid ,hot weather and thunderstorms make things very bad(and also fireworks are very bad too). Not everyone is helped by cold, but there are plenty of options for those who like hot modalities so I thought I'd post for those who need cold therapy....oh and my cherry pit pack is great in the freezer as a reusable option. It can be used both warm or cold so its a great investment!

[@lindagorman8939]

Yes. We are sufferers. I couldn’t stand there for that long nor be able to travel to get there for your talks. I can’t even walk out to my balcony. I do suffer. Terribly. I appreciate your positivity, but what you;are saying is not real. Life long athlete, now bed written. Yes, it took my career and my passion.

[@RSDSA]

Linda, thank you for writing. I'm sorry that you're suffering so terribly. May we send you some information about non-opiate medication options? If yes, please email us at [e-mail] Best of health, Jim

[@gregbisesi9966]

Linda Gorman Same with my wife too. Athlete, runner, cyclist and training for her first bodybuilding contest. Taken from her 3 years ago after a foot injury. She was and still is devastated. But we’ve researched, and searched for a remedy for this disease. We have had very good results with Neridronate infusions, she had a course of infusion in Italy a year ago. The Italian physician recommends a second round which we will be going to Italy for in the next 3 weeks. A KZbin email friend whose daughter just came from treatment in Italy told me her treating doctor recommended a supplement called Normast. The results have been amazing. One 400 mg pill per day has given more relief from burning and pain than the high dose of Gralise. We did have a round of Pamidronate back in May. It did not bump her back into remission but it did allow here to get off her 1200mg of Gralise but of course pain and peripheral burning was not totally abated but she could bear the pain in order to get of the med that was turning her into a zombie. The Normast has brought the pain and burn to a manageable level. We even did a 4.5 mile hike last week and she wasn’t slapped to the couch prior to the supplement. We’re going to beat this. She’s already on a course back to some normalcy. And we hope and pray this next treatment of Neridronate will seal the deal. Back in February she had her little toe amputated that was so deformed from 2 years of neuropathy before the first Neridronate treatment was done, so she could wear a shoe and walk normally. What a f’d up disease that forces you to cut off a body part to try and be normal. Never stop trying and researching and pushing your physicians out of their comfort box to try different meds and treatments. Don’t settle for treatments like Ketamine that only treat a symptom. Big Pharma doesn’t want you cured when they can keep shooting ketamine in your veins and shoving gabapentin down your throat and raking in record profits keeping you sick. God bless and improved health.

[@isabella3025]

Can somebody pls tell me is stem cells treatment works ?

[@gregbisesi9966]

Isabella From my online research, stem cell for CRPS is in very early stages of study so I personally have not found anything that says there’s a benefit to stem cell in CRPS. Plus there’s a link between stem cell and latent development of squamous cell carcinoma. My best friend had stem cell for his hip and 8 months later had to have 3 large carcinoma surgically removed from his back and leg. I think you’d be better off looking into IVIG, they’ve had some early success with it for pain and swelling reduction. But I hear it’s pricy. Again, I promote Bisphosphonate infusions. It worked for my wife. Good luck and God bless

[@isabella3025]

@Greg Bisesi thanks for your explanation ,I have done almost everything Including IVIG ,It did not work for me ,pending to try scramble therapy, for neridronate IV infusión I NEED to travel to Italy and now I can't afford it.But Im initiating in yoga starting breathing excersices ,and belive it or not my sympathetic nervous sistem is shooting little bit down in only 4 sessions.My recomendation to everyone who is suffering from this challenging and hell condition's, is to give it a try to YOGA adjusting it to your physicall condition,you can start with breathing exercises.I also recommend TEDX talks in you tube abt breathing experiences

[@kerryswann655]

Brilliant

[@brandonwittlinger5542]

just diagnosed a month ago... not very fun

[@TheDimachaerus]

She is still in tons of pain.

[@RussEastburn]

've had CRPS for 9 years. It's a lonely place that no one including those closest to me truly believes or can begin to understand. Its spread through my whole body My end game I see as only being suicide I can't do this any longer.

[@isabella3025]

Its so sad. My life changed since CRPS diagnosis

[@eileenknight9682]

13 years for me . I too am seriously considering assisted dying

[@jesus4u277]

Please know that we understand, and you will be in my prayers that the Lord will give you the strength that you need.

[@TheDimachaerus]

The Spero Clinic in Fayetteville, Arkansas.

[@foxxrunner7989]

Very stuck up

[@SouthsideNik]

Yes! Gracie acts so sweet but she kicks sufferers out of such helpful groups if she disagrees with anything you say. She’s a a very nasty person or haz become one in the past several years. Very shameful