Emerging Therapies for CRPS and The National Pain Strategy with Sean Mackey - RSDSA

[@rsdno]

This is great information Ive had RSD since 1968 diagnosis, they have tried everything on me ,after 50 years you think they could just help the pain and stop hurting me since when did we pay someone(a Doctor) to say he doesnt do anything and the Doc gets paid ,what a life ,in my 50 years and at leat 20 online with RSDSA its the best site I have seen and the man who runs it is determined to help RSD Thank You Jim and others trying to help rsdno And what a great movie too Thank You rsdno

[@hollybuehrer5458]

Q

[@serinadelmar6012]

Thank you so much for all you do for CRPS warriors, truly. ♥️

[@RSDSA]

Always here to help, Serina!

[@serinadelmar6012]

RSDSA bless you, thank you ♥️

[@ATATKDMama]

Doctors, Please keep this going. I've had RSD for 10 years now & many days are so bad I want to give up. It's a shit disease because no one can see it or understand it. It's very isolating. And no one can understand the level of pain, burning, tingling, sensitivity, paralysis, etc.

[@HollyWatson-ti4db]

This is a monster! The pain levels I’ve experienced I never knew existed! 😳

[@terew9145]

So Needed, no doubt. .Much Gratitude for this validation of CRPS..😃

[@RSDSA]

You're welcome, Tere!

[@thecookbook3321]

I thank you for your work and interest in crps.

[@sunnymacduffee6849]

What high quality pain care I’ve never found it

[@GARTHBOOTS]

The LDN worked for about five years but it don't seem to work as good years later. I found this myself and brought information to my GP at the time because no one else would help me .iT was amazing the 5 years and I'm still on it.

[@RSDSA]

Have you investigated Peapure?

[@thecookbook3321]

Insurance companies dictate what treatment you can have.

[@RussEastburn]

I'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.

[@GARTHBOOTS]

I know what your going through.Iv been in hell for 17 years of full-body rsd/crps.I have done everything there is and have been fighting hard. Nothing lasts for long term. I have it full-body as well.My brain is on fire and spread to my eyes,nose,mouth,whole head and face down to my toes. I don't know what to do anymore and I'm not someone who gives up easy but Iv had enough to. There are good Dr's but don't want to help due to maybe loosing there practice. Please share if you know of other treatments.I really need help.I have done everything I can do to help myself and try to work with Dr;s but it is hard because of patients who abuse there med's. Iv done 17 year's of research and reaching out but as I said Dr's are afraid to help because of the medication abuse.Not fair to patients who never abused anything.Thank-you for this video and Thank-you Jim Broatch for all of your hard work.He care's about all of us.

[@michaelgillard3499]

I sincerely hope you have someone close to you can talk to me as I know this is help me

[@chaddthebadd]

so positive to hear, i am a 6 year rsd patient

[@jasonrichter497]

Keep up the good work!

[@tinashelton9499]

I am in the Houston Texas area and I need help. I have CRPS, for over 20 years. I recently got off Narco 10 as of February this year but now suffer even more. I volunteered to get off the medication.

[@RSDSA]

google Dr. Kenneth Wu the the Sprint Center, he's very familiar with CRPS

[@graciegeanchronicpainadvoc972]

Excellent! Thank you!

[@girlwhosbeenthroughalot4997]

Thank you Dr and Drs.! Ive been begging for this kind of assistance . Hi Im a 43 year old female and Ive lived with this for 12 years now. Ive researched and listened and try to ask for help because this ILLNESS is real not a good time that we slap a pain pill on it and thats it.? It definitely is a team approach but what if you just realize there is no i in team? I deserve to feel well/better . I engage with my drs but they dont know that much. Should i have only learmed about ketamine infusions on my own? No directions .. Ive tried many things and i believe I can help with some of my trials and errors. My illness has spread since my hysterectomy this past Sep. Thank you again for doing the utubes. IM NOT ALONE.!

[@girlwhosbeenthroughalot4997]

May I add I will continue to fight. To try new things because this has affected myself , kids , partner , parents, friends and now my grandson.

[@jeanettevenuscabrerahall812]

I was just diagnosed with CRPS; I know so little about this but I am trying desperately to learn.

[@RSDSA]

Jena, please email us at [e-mail] and we can definitely help you

[@janpoole910]

You are lucky, if you get early treatment, it can go into remission. I was misdiagnosed 20 years ago and have been suffering for that long! Google burning nights. RSD It's a UK site that tells you everything!

[@gregbisesi9966]

Yes Jenna get help now in the early stages. You’ve started on a good path of educating yourself. With this disease you are going to be your best healthcare advocate because Doctors are not familiar with the disease or the newest available treatments. My wife has been battling it for over 2 years. We’ve made progress. My wife’s CRPS started with multiple surgeries on a right foot injury. We did the blocks, Ketamine, lyrica, Gralise, cognitive and brain remapping etc with little relief. Last year we went to Italy for Neridronate infusions. It worked very well. Unfortunately she needed to have a pinky toe amputated from the severe neuropathy and subsequent contracture of the toe, so much she was unable to wear a shoe or walk properly. Unfortunately after the amputation in February the CRPS did return albeit not as severe. Our pain clinic doctor did agree to try an infusion regimen of Pamidronate. It did help and she was able to wean off her 1200mg of Gralise, but wasn’t the magic bullet. We consulted a physician in Italy and he said she would be eligible for a 2nd round of Neridronate to try and get her into remission. So we will be going back to Italy in 2 weeks for another round. Also something you can do now is Try a supplement called Normast. A woman I have been in contact with from a KZbin video said the Italian doctor that her daughter got Neridronate from recommend it. My wife tried it and it’s done way more pain and burning relief than the 1200mg of the Gralise rat poison ever did. Google Normast for purchase options. If you have any interest in Neridronate, I can give you information for the two options we have experience with. If you have interest in Pamidronate I can give you the contact information for our physician here in Utah. You will not find many physicians that will administer it, and administer it with the Italian protocol, not the failed reduced dose U.S. trial. If you have decent insurance, ours paid for all the Pamidronate infusion meds and office visits. I can not stress enough to get either bisphosphonate treatment ASAP. The worse this disease gets the more difficult it is to get into remission. With CRPS, time is not your friend. We’re more than happy to share any information that we have used in our relentless journey to get Wendy back to health. You or anyone else are more than welcome to contact me direct at my email [e-mail]. CRPS sufferers are pretty much on our own. The FDA just axed the phase 3 Neridronate trial here in the states. That means no fast track for the lifesaving bisphosphonate for a few more years. Now if it was an erectile disfunction drug it would be on the market in a week. Big Pharma and the FDA would rather keep poisoning us with Ketamine and gabapentin, than cure us with Neridronate. Keep strong CRPS warriors, hope is there we just have to find it.

[@sunnymacduffee6849]

How many people have to die from enduring too much pain before something is actually done to help them

[@paradise6606]

Please help me. I have had CRPS for eight years now.

[@RSDSA]

what is your email?

[@RSDSA]

please email me at [e-mail] and I'll try to help

[@haley9524]

I have been in excruciating pain for several years now and it started after getting a Spinal Cord Stimulator Implant (it's what I believe) I was laying down in bed and I felt like I was this enormous heating pad on the highest setting all coming from where I had my Implant:-( I wish I had some guidance, assistance anything at this point!! My email is [e-mail] Thank you so very much!!

[@dss7507]

Am in severe pain 2 years left side. Plzz help

[@RSDSA]

Please email us at [e-mail].

[@sunnymacduffee6849]

When will you do something about chronic pain instead of talking about it

[@rsdno]

+The main thing if you get any medicine for pain tell no one ever not your daughter or sister no one you just hurt people who have always done everything right

[@rsdno]

I wish I had been left alone since 6 years ago and have what worked most of my life , they even tried to treat me with Naltrex (nalaxone) I tried nearly _ _ _

[@luby1234]

anyone doing a study around iowa?

[@RSDSA]

investigate by visiting clinicaltrials.gov and enter CRPS

[@rsdno]

Ive been in more studies in the last 55 years a couple help3ed for a couple days ,pain meds should be for people in pain not junkies or sisters wives or your kids Im always willing to go to the ER with someone hurting but if I give up anything prescribed then the Doctors are right we cant be trusted with our meds ,Im going to help prove they are wrong

[@sunnymacduffee6849]

Why go to the doctor about the pain nothing ever happens No solutions are offered

[@GARTHBOOTS]

Because others think we have ten heads.We try but I can't blame them they don't get it.That make's being around other;s very hard.

[@ericaleemathews4780]

No poop Sherlock being isolated by pain caused depression and anger. But it's not us, it's normals They dump you because you aren't reliable, fun enough anymore, can't drive, etc etc etc. I'd love to be social. My friends and most of my family don't want to be bothered with someone who needs a walker for distances, or has to cancel at the last minute for bad flares. What part of this have you missed? We want human contact like all get out. But with compassion.

[@fibroflutters1940]

Fantastic! Thank you.