Okay here it goes. First off, I have rarely if ever heard anyone give such insight into this condition (which I suffer from).This 3 part series is absolutely amazing, and spot-on for the very most part. The overall message is so important, and may be things that many CRPS patients don't understand about what they are going through. However, there was a few items in the videos that were said that I believe were slightly off base. #1; It is likely that the number one "myth" these days about CRPS is that it can heal. That you can just naturally recover from it. Friends, family, and even medical people still seem to think you can improve and heal with time. Nope. The idea that it is "all in our head" has been for the most part abandoned, and de-bunked for some time (thank goodness!). #2; "Spread" is a poor term for what CRPS does (this is quibbling, I admit). That sounds like what a fungus does. It is better described in my opinion as a transfer, or a jump. It does not take, nor need a clear path to where it "spreads". And thus is not really a spread at all. #3; Patients with this do in fact often have to "walk this road alone". Very alone. My wife and myself have been trying to find me help for almost eight years, and have found none at all. We haven't even ever sat across from a medical professional who understood this condition. Finding a doctor to help you with this is nearly impossible. It seems to fall between every specialty. It is the only condition I can find which affects virtually every bodily system. #4;The section about using electrical devices and treatments was for the most part acceptable for me. Excepting the use of smart micro-current. This has proven to be highly beneficial for me. She is so correct that using it on the afflicted areas is a very questionable strategy. Where it does need to be used is on the brain, through the optic nerves (placed at the temples). That is likely where the problem is actually rooted (probably the Basal Ganglia region. The same region that causes Dystonia symptoms). Current-based treatments are not your mothers old tens devices. Fisher-wallace company makes a headband device that portends to lower brain signals that are too high, and awaken ones that are sort of sleeping. I use this device, and believe every word of it. Studies on this device have proven that is provides relief for chronic pain patients. It is the only thing (and we have tried about everything!) that actually put me into semi-remmision for three whole months. Micro current, and electroceuticals (look them up!) are the wave of future medicine. They haven't been very accepted yet, much as chiropractic was not accepted for many decades. They will be. #5; What was stated about ketamine, its short-term benefits, its toxicity, were all very correct. Also, it can also be very traumatic to do infusions. It feels like it goes to war with your CRPS. It can be painful. What wasn't said was that it is costly, and not usually covered by anyone's insurance. The part that was in slight error was that you do not generally have to stay admitted to do treatments. I have had many, and have never had to stay over an hour after infusion. Either in hospitol, or in ketamine clinics. Now just a last thing, some items that were not mentioned that likely should have been; Diet (certain foods can really worsen your inflammation. and certain foods can control cortisol levels and can help it. Caffeine, for instance, should be avoided as it constricts your blood vessels. and CRPS already does that.). This is a highly female dominated condition (like stiff person syndrome, and fibromyalgia). This is also a condition that people may be predisposed to. There is a genetic factor involved. Sorry, but I had a lot to say about this amazing three-part video series. I have shared it in my CRPS group on FB.
Upon further reflection, research, and experiences- I take back nearly every petty critisism that I made. The fact is that these videos entirely changed my understanding and approach to my condition (overnight). It is dificult to convey how incredibly counterintuitive it really is for someone with CRPS to move their afflicted area(s). It is kind of like telling someone with a broken leg to flex it, move it around, walk it off...it is not something that even occurred to me in almost 8 years. And what Alissa is trying to say in a nutshell, is that these other approaches are either numbing you, or trying to trick you into feelng better. When what needs to happen is you need to CONVINCE the loop that has been damaged between mind and body to normalize once again. This may be the only approach that will not slip away after a few weeks or a few months. These are ways to begin to reverse the irregularity that is happening between the mind and the body (the software, and the hardware).
I have a friend with CRPS and I've learned so much from these videos. I can't believe people live this way. It's like a thing of fiction or like as if someone made a version of hell. I at least know ways to help my friend.
Can you do information about AMPS? I suffer with it and day to day I’m in constant pain, having tics, seizures, low grade or high grade fevers, constant gi pain and disfunction, mobility issues, high heart rate, falling spells, juvenile fibromyalgia, and so much more. I used to be a decently happy teenager but AMPS has ruined my life, I’m losing my ability to walk day by day and psychical therapy won’t get me in till two months, that’s next year, my body is disheveling every single day and nobody gets it. I tried committing suicide because of how bad the pain was in May. All these doctors, medications and appointments but my body is still failing on me.
I have a lot to say about this video "series", as an 8 year sufferer of CRPS. Most of them are very positive, such as THIS IS THE SINGLE BEST DESCRIPTION OF THE CONDITION I HAVE EVER HEARD. But I think there are also just a few errors of sorts, and I will re-watch the all three videos before pointing them out.....please stand by.
I tried setting up a call but it said unfortunately this is not available for you but try this other program. I’m at the end of my rope and thought I had a chance at life but I guess I can’t even get a hold of you. Please help please
![[PART 1] Understanding CRPS: The Truth About it’s Neurobiology and Effective Treatments](http://i.ytimg.com/vi/XBB_7MrJkQA/mqdefault.jpg)
![[PART 2] Understanding CRPS: The Truth About it’s Neurobiology and Effective Treatments](/img/1.gif)
Okay here it goes. First off, I have rarely if ever heard anyone give such insight into this condition (which I suffer from).This 3 part series is absolutely amazing, and spot-on for the very most part. The overall message is so important, and may be things that many CRPS patients don't understand about what they are going through. However, there was a few items in the videos that were said that I believe were slightly off base. #1; It is likely that the number one "myth" these days about CRPS is that it can heal. That you can just naturally recover from it. Friends, family, and even medical people still seem to think you can improve and heal with time. Nope. The idea that it is "all in our head" has been for the most part abandoned, and de-bunked for some time (thank goodness!). #2; "Spread" is a poor term for what CRPS does (this is quibbling, I admit). That sounds like what a fungus does. It is better described in my opinion as a transfer, or a jump. It does not take, nor need a clear path to where it "spreads". And thus is not really a spread at all. #3; Patients with this do in fact often have to "walk this road alone". Very alone. My wife and myself have been trying to find me help for almost eight years, and have found none at all. We haven't even ever sat across from a medical professional who understood this condition. Finding a doctor to help you with this is nearly impossible. It seems to fall between every specialty. It is the only condition I can find which affects virtually every bodily system. #4;The section about using electrical devices and treatments was for the most part acceptable for me. Excepting the use of smart micro-current. This has proven to be highly beneficial for me. She is so correct that using it on the afflicted areas is a very questionable strategy. Where it does need to be used is on the brain, through the optic nerves (placed at the temples). That is likely where the problem is actually rooted (probably the Basal Ganglia region. The same region that causes Dystonia symptoms). Current-based treatments are not your mothers old tens devices. Fisher-wallace company makes a headband device that portends to lower brain signals that are too high, and awaken ones that are sort of sleeping. I use this device, and believe every word of it. Studies on this device have proven that is provides relief for chronic pain patients. It is the only thing (and we have tried about everything!) that actually put me into semi-remmision for three whole months. Micro current, and electroceuticals (look them up!) are the wave of future medicine. They haven't been very accepted yet, much as chiropractic was not accepted for many decades. They will be. #5; What was stated about ketamine, its short-term benefits, its toxicity, were all very correct. Also, it can also be very traumatic to do infusions. It feels like it goes to war with your CRPS. It can be painful. What wasn't said was that it is costly, and not usually covered by anyone's insurance. The part that was in slight error was that you do not generally have to stay admitted to do treatments. I have had many, and have never had to stay over an hour after infusion. Either in hospitol, or in ketamine clinics. Now just a last thing, some items that were not mentioned that likely should have been; Diet (certain foods can really worsen your inflammation. and certain foods can control cortisol levels and can help it. Caffeine, for instance, should be avoided as it constricts your blood vessels. and CRPS already does that.). This is a highly female dominated condition (like stiff person syndrome, and fibromyalgia). This is also a condition that people may be predisposed to. There is a genetic factor involved. Sorry, but I had a lot to say about this amazing three-part video series. I have shared it in my CRPS group on FB.
Upon further reflection, research, and experiences- I take back nearly every petty critisism that I made. The fact is that these videos entirely changed my understanding and approach to my condition (overnight). It is dificult to convey how incredibly counterintuitive it really is for someone with CRPS to move their afflicted area(s). It is kind of like telling someone with a broken leg to flex it, move it around, walk it off...it is not something that even occurred to me in almost 8 years. And what Alissa is trying to say in a nutshell, is that these other approaches are either numbing you, or trying to trick you into feelng better. When what needs to happen is you need to CONVINCE the loop that has been damaged between mind and body to normalize once again. This may be the only approach that will not slip away after a few weeks or a few months. These are ways to begin to reverse the irregularity that is happening between the mind and the body (the software, and the hardware).
Nobody is reading your dumb comments 😂
I have a friend with CRPS and I've learned so much from these videos. I can't believe people live this way. It's like a thing of fiction or like as if someone made a version of hell. I at least know ways to help my friend.
Where can I get this therapy in Upstate New York?
Can you do information about AMPS? I suffer with it and day to day I’m in constant pain, having tics, seizures, low grade or high grade fevers, constant gi pain and disfunction, mobility issues, high heart rate, falling spells, juvenile fibromyalgia, and so much more. I used to be a decently happy teenager but AMPS has ruined my life, I’m losing my ability to walk day by day and psychical therapy won’t get me in till two months, that’s next year, my body is disheveling every single day and nobody gets it. I tried committing suicide because of how bad the pain was in May. All these doctors, medications and appointments but my body is still failing on me.
I have a lot to say about this video "series", as an 8 year sufferer of CRPS. Most of them are very positive, such as THIS IS THE SINGLE BEST DESCRIPTION OF THE CONDITION I HAVE EVER HEARD. But I think there are also just a few errors of sorts, and I will re-watch the all three videos before pointing them out.....please stand by.
Only 8? Hi, 20 years here. I’ve done everything. Everything. Just living and exhausted
Some things in the videos may not be applicable to you. Does not mean they are wrong. Please do not generalize your experience.
I tried setting up a call but it said unfortunately this is not available for you but try this other program. I’m at the end of my rope and thought I had a chance at life but I guess I can’t even get a hold of you. Please help please
Please use this link: calendly.com/alissawolfe/pain-care-audit