I’ve seen POTS come up on a few threads and then I was listening to this recent podcast by a couple of founding experts in neuroplastic symptoms so I thought I would post it in case anyone is interested to learn about it. They did a recent one on long Covid as well. Cheers!
Thank you for the link, @Chrickychricky. With the number of members we have who suffer with POTS, I expect this will provide some insightful information for all who watch/listen to it.
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Thanks for that info @Chrickychricky 
Chricky, thanks for posting this however I take this one with a grain of salt. I found the session to be a bit long and left waiting for some answers. It reminds me of some of these info-commercials trying to sell the next best supplement or protocol to cure all your ills but you have to listen to the spheal for 20 minutes before you get to the end.
The was a big pushback on some paper put out a few months back that was in the Chronic Pain Partners group (patients were not happy about this) that essential said its all in you head and the ties to psychiatric conditions to POTS and chronic pain conditions. The pain partners and other patient groups were not happy with this kind of labeling.
Having had a daughter with severe hEDS, MCAS and POTS that started at age 7, this video is not representative of many POTS patients. Although mind-body connection is an important aspect to consider with any chronic illness, this approach is NOT the save all to end all. This patient has a history we are not being told the whole story about. Clearly she had addiction, trauma and psychiatric issues and we know nothing about her early life. I can say from personal experience (50+ years) and done in-depth study and seen many specialists that hEDS and the nerve problems it can cause can not be cured by neuroplastic science. Ive attached a scientific paper if you want to know more about this science. I have no doubt there is some positive sides to this.
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@Snapple2020 I am sorry to hear about your daughter. I have been hesitant to post anything about neuroplastic symptoms for fear of negative responses from the community thinking that it means as you “it’s all in your head” or that it is the only answer. Neither of those things are true. Neuroplastic symptoms are real symptoms and do not represent a psychiatric disorder. The source of the symptoms is what is different. For example, a person can have an injury and develop pain from a structural problem and sometimes when the structure heals they still have pain. If you put that person in an fmri you will see that the pain centers of their brain are no longer activate but their memory centers are. That person might fruitlessly continue to look for structural fixes, have injections, take pills, have surgery with no relief because it is no longer the structure that is generating the pain. The brain is deciding that there is still pain. I think this work can be enormously useful for people in our community who are still suffering after all the structural issues have been identified and treated. It’s not a failure of the brain, hypervigalence and survival are built into our nervous systems. Early ancestors who were less vigilant likely didn’t survive to pass on their DNA. There is no blaming here or a suggestion that there is some sort of weakness of character, it’s simply how the brain learns safety habits. The short film PainBrain gives a much better presentation than I have just given specific to chronic pain. For a little more fun google YouTube rubber arm experiment. If you want to understand how the brain develops habit networks in a fun way google, YouTube backward bicycle. For a funny but scientific look google YouTube Lorimer Moseley.
As someone with neuroplastic symptoms I can say that, once you realize that you are not being blamed for your symptoms, it has been so hopeful and helpful to learn how to work with my own nervous system to improve my quality of life. I can say with certainty that I don’t want to get into a tug of war about this topic or defend it to people who don’t understand it. I think it’s a possible way out and I wanted to share it in case it would be useful. Anyone who doesn’t think it’s useful can simply not pick it up.
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Hi Chricky,
I think there is certainly something to neuroplasticity. Im not so sure this video is the right messaging. I used to design patient education programs and there is probably a better way to educate people on this. Having been to several pain centers, Im familiar with the pain path to the brain science and how it needs to be distrupted to break pain cycles but it doesn’t always work in all patients. One of my daughters was diagnosed with CRPS and put in an inpatient program that believed in lots of exercise like the one that patient went to in video (Cleveland Clinic). In my opinion it only served to upset her more and was like a nazi camp. It was not helpful and I believe some of their beliefs dont work for me or my family. The program she went to was not well run.
This is another tool in the tool box to consider when dealing with chronic pain when there is no longer structural issues. Ive always been big believer in what works for one doesnt mean it works for all. Anything that helps any patient is a positive.
Im pretty well schooled on EDS and many with it have a propensity for high inflammation in the body which makes us prone to early onset and severe osteoarthritis. Also studies show a demyelination of nerves making them more prone to be excitable and hypersensitivity. This is a structural issue. My nerves are considered soft and highly prone to adhesions and compressions. I cant tell you how many times I have had imaging (then gaslight) and told there was nothing there but years later find nerve compressions that once fixed, the pain was gone.
I think everyone who lives in chronic pain can benefit by being educated on the science of pain and neuroplastic tools to improve quality of life.
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