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A stupid video. How do you discuss a complex very difficult disease by jumping from one person to another. Most frustrating.

I have crps and a spinal cord injury, my crps is so much worse than my spinal cord injury as it just gets more chronic and spastic. So every charity and function is greatly appreciated. Keep walking for those Orange ribbons.

I ca tell you its a fact mmj works 30 years

People who cannot afford medical marijuna should be covered by insurance people cannot afford it. Best pain and symptom relief as well as chinese meds accupuncture aquatic therapies intergrative manual therapies biofeedback. Ti chi Again opioid crisis is ileagal fentynal heroine. Our government is responsable its coming from china through mexico fact Aga

Opiod crisis is bullshiznit pesudo fentanal heroine MM works

Ned to stop bad doctors to Stop tourturing rsd pat8ens

Intergrative manual therapy chinese meds mio fascia release worked for me. Gifted healer only thing got me better biofeedback aquatic therspy. All helped me I do know Neil. Had many d9ctors make me worse

So there's no good news then. Maybe say that at the head of the fucking presentation.

Gluten free diets are unhealthy and harmful

B1 thiamin deficiency!! You won't believe the research connection

CRPS is the worst thing ever, and then you have to deal with people saying your faking it, makes it even worse. Just imagine going to sleep with the worst pain you've ever felt, and waking up and it still there day after day

As a suffer of CRPS I found most of this video alarming 😮😢

How long should a person wait between bowen sessions ? I have back pain

I have just this week been diagnosed with post-viral fatigue syndrome - and I'm the calmest I've ever been. My negative affect centres feel dormant. It's a placid experience. I don't understand how calming down could possibly add anything to my already tranquil state.

I think this horrible disease is what my mother had, but it affected her head and neck. She was diagnosed eventually with Dystonia, but it wasn’t typical dystopia so she was told it was all in her head. I cried for days for my mom because she was in so much pain. I was told by a pain specialist that CRPD can’t affect the head & neck, but on a Facebook group a nice American lady told me she’d seen one of the top specialists in the USA and yes, you can get it in the head and neck. It affected the left side of mother’s head and neck. On a couple of occasions it looked like someone had painted half her face pink. It was symmetrical too right down the centre of her face. The hair on her affected side also went curly. My mom sadly died from Covid in Oct ‘22 and had other health issues too and was housebound for many, many years of suffering from this. It was agony for her to travel anywhere. The bumps in the road caused her agony. Even the wind blowing on her hair. It makes me so sad that despite my best efforts, I couldn’t get her help because Drs, even specialists didn’t understand. I only hope that one day a cure is found, or at least pain relief. RIP Mom. No more pain or suffering now. 🙏🏻

they could see I wasn't making it up.. foot black.. unable to touch.. My muscle wasted away.. horrible illness..

Document you objective information in writing give doc a copy insurance a coppy andcopy for your own file

I have CRPS and I would not wish this on my worst enemy.

Thanks for this, this helps me as a girlfriend/caregiver of a CRPS patient. I feel so heard. Not very many people understand and this is exactly what I needed to hear tonight.

Where is the research and evidence that this helps - particularly the timing and working through a flare?

Carnivore and keto diets seem to have miraculous results for my wife with CRPS from a laparoscopic foot surgery 5 years ago.. in just three days after elimination of sugar/carbs her symptoms have markedly resided..

I got it 1 & 1/2 weeks after a dental implant in lower right jaw. R wrist and hand swelled, turned bright red & was contracted. Couldn’t open my hand. The pain was unbelievable. If I moved wrong I screamed. Otherwise it just throbbed like I’ve never felt before. It went down in about 2 weeks completely. I had Lyme Disease for years and was better until I had a spider bite last summer. I started getting sicker and in pain all over. I think I’ve had it simmering for a while. I researched and found a clinic that has helped people to be free of pain, to walk again and get their lives back. I’m going next month. Thank you to all the doctors who care about people with this disease. We will overcome by God’s grace and mercy! God bless you to every patient in Jesus’ name🙏🏼❤️‍🩹

I’ve had extreme CRPS for the last nine months. last month I finished opiate withdrawals and I started smoking marijuana. I’ll take pot over opiates any day of the week and it does make a difference and several ways physical mental several ways down each of those avenues all positive.

Such a useful and compassionate talk for everyone, sufferers (I’ve had CRPS for 16 years) and care givers/medical professionals alike, especially with regards to acceptance. Is there a bibliography or PowerPoint available that goes with this talk? Thanks so much :)

Very interesting, thank you!

Not as easy as u think 😢

I've had this for 19 years from spinal surgeries and multi-fusion and seen hundreds of doctors and all are clueless what CRPS is. I've given up trying. This condition will always be a "catch-all" for doctors when all else fails, and nothing more. Conclusive testing requires a lab result, not a subjective patient response. Until pain can actually be imaged, or an assay is developed, it will always remain just us few saying we're in pain and hoping they believe it. It's in my notes as "anthralgia" and "causalgia" and I've been on a cocktail of Levothyroxine, Duloxetine, Pregabalin and Zolpidem for many years, and suffering terrible side effects. My life is only worth living because I do continue to exercise and be active as a diversionary tactics. I do appreciate this video, and am grateful it is on YT. However, when you talk about long term CRPS requiring a "specialist", there is none; that is the problem. Dr Getson is a couple of hours from me over in NJ but I've never received a call or email back from his office and he doesn't take medicare. So there ya go. Best of luck to everyone.

My Ulnar Head was Removed and I developed “RSDS” and now I’m Permanently Disabled

"He is Risen!" The Spirit led me to you all after 2 years of prayer!

I had spinal fusion on 4 levels and a decompression months 18months ago unfortunately it was not a success I now have to walk with crutches because I have lost almost all power in one leg ,I now have developed crps in my leg, prayers to all who are going through this

Very informative presentation, it feels good to know that some doctors out there do care about us CRPS warriors!! Many times we are ignored or overlooked by many, this gives me so much hope... i'm in the process of accessing this new treatment, called Neradronate, my doctors have heard very good things about it. I hope this will be "it" for me..

I remember none of my doctors could tell what it was for months... luckily enough a surgeon recognized the swelling, the change in color and th terrible pain I was in! If only there was more awareness in the US... I will probably have to consider going overseas to get my life back on track since I have heard good things about a treatment in Italy..

You can do HBOT in Pocatello Idaho, mom hospital, $125 per sessions You can do sessions a day, they have a live on site opportunity while you do your treatments.

I have widespread I don't Think anyone I know could go thru what I go thru. I've always had a high pain tolerance but when it effects the whole body or my whole nervous system crashes. My pain can cause pain induced seizures, lights, temperature, and noise can cause my pain to get worse, even just my hubby talking slight to loud toasts my ear, is like I have to plug my ears off feels like a full on attack to my body. But especially stress, any kind of stress, even eating to fast can catse a huge flair where I have to go under a blanket in the dark. When I awake I'm Sooo Stiff, it takes everything I have to even open my hand, turn, or stretch, but I have to move all my body, and stretch in order to reduce my pain. I got this directly after a spinal cord and brain injury. It started in my calves oddly and I kept telling Drs but they sayd, it's 99% not immflamation induced, within 6 months it was widespread and had a full crash retirning a netflix movie on Christmas eve. Even though it feels like really bad inflammation. Like shutting your finger in the door and the pulsing right after, that's the whole body but it never goes away, the bone is even effected as if a really bad flu. Even on pain meds it feels like ice cube pushed into the skin and you can't remove it. When I'm bad even a fan can cause severe pain to all my body. When my husband gets into bed and moves the sheets, it's enough to make me sobb, if he puts his hands on my thighs to show affection, it's everything I got to not push his hand away, I just hold his hand still, so he don't keep moving it. I try so hard to keep quite about my pain. But it's so hard. I'm on palliative care, after the second TBI it made my crps WAY worse. I am on opiates and belbuca 700 mcg 2xs a 24 hr and 15 mg every 4 hrs of oxy. We're still trying to find a proper dose where my nervous system is not in distress. I feel the oxy helps more then anything else, I've tried over 45 medications to help this. I have now multi organ dysfunction due to the last head injury, that has given me mylti autoimmune dieases, and also have hyper EDS. As well as major inflamed muscle trigger points throughout my body and stage 4 adrenal fatigue. My cortisol is higher then anyone my Dr has ever seen, but it's cause I'm in SO MUCH pain all day and night. Nights are worse cause you can't use distraction to help. If I could have this in only 1 limb would be so much easier. Any ideas to help me better is much appreciated. I just want to be not be bed bound. I NEED to move, I can't lose anymore muscle mass. Moving to dryer climate has helped some. Summers are better, too. So somehow the sun helps.

Try to enjoy life when half of what you experience is pain. Oh, and now we live in this puritanically insanity society, where street Drug addicts are given drugs', and every day people in pain are told to take useless Tylenol.

That Doctor is a quack and the devil he almost murder*d me

I believe you may want to look in to Mrs. Alissa Wolfe, pain specialist. She has three incredibly eye-opening videos on CRPS (youtube). It is very cutting edge, and the best break down of this condition on a neurological level I have ever heard from anyone. Also, there is a current study going on in Liverpool England which involves blocking the IL1 antibody (which causes inflammation purposefully in your body) which is very promising.

Look like you did not went throng much problems big notes and reading from it ! I have crps I do not think I can do anything with pain you are moving very freely!

I suppose there may be some truth in this but having watched the video of Sunday Sommers (she has posted below) and heard of at least 3 other people that have had denervation or cutting of the nerve to get rid of pain, then it's certainly not the whole story. I had incredible thumb pain from osteoarthritis and chose to have the nerves cut. Felt very strange for a while but absolutely no pain now. No nerve to carry the pain signal = no pain. Can't blame the gut on that.

This is so useful. Thank you 💞

Huge question: when is it ok for me to let myself use a wheelchair? When is my oain valid enough? I've had crps for 45 years in my feet and spread now. How fo I convince myself its real at some point? How can I have this much pain every second for 45 years? It feels so surreal sometimes. I do see a pain psychologist. Its hard to be aging alone with it getting worse and not giving up.

Dr Hess was one of the Best Doctors I have seen for RSD

Maybe if part of medical school should be to undergo at least 24 hours with a chronic pain syndrome. CRPS and centralized pain syndrome would be best.

Lisfranc fracture to first, second, third metatarsals. This happened after I’d finished treatment for stage 3B bowel cancer. Caring for my dying man following fractures and closed reduction three plates 18 screws in situ. After the passing of my beautiful man I returned to the otheopaedic surgeon had an X-ray told him about my symptoms he could visibly see the color change in my foot, the oedema, hyper vigilant to any threat to foot. Nothing can touch my foot. Surgeon informed me he could not remove the plates and screws because I have a disease called CRPS. Never heard of it. Here I was thinking yay I’ll have surgery have plates and screws and I will no longer in my foot. Shy of 6 years of CRPS diagnosis. I’ve asked on many occasions to have my leg amputated. The CRPS has spread to my leg. I’ve been on every medication but I was sick of the drugs and went cold turkey. Frozen foot syndrome and at the same time my foot is burning. I imagine this is what frost bite feels like. Drugs don’t work for CRPS. Opioids are for acute pain not for CRPS. Cruel and brutal disease.

Is there a way to contact Cammie to help in some way? I saw Dr Hess for quite some time, I would love to get involved and help you with whatever you could use help with. I certainly have a story to tell!

Please let me know how I can join you to help!

I'm not sure how to get thru to talk now but I began my pain path with Dr. He's. He treated me with many different things and we found what works for me. I was then able to go to my primary care Dr. and he just continues what Dr. Hess figure d out and started. Thank you!!(

Thank you

What is the treatment ?????