Devaraj, it def creates psychological issues - there's chronic underlying instability and the body is constantly gripping "here" and "there" in a desperate attempt to hold its joints together. Physical "instability" is also mental "instability". There's constant self-doubt, and fear of planning things because once the pain starts, all bets are off.
All that alone makes you crazy! But then there's the lifetime of being gaslit- or hiding away - and never being able to fully participate in life...
and the physiological anxiety of a highly activated SNS, day in and day out...
Hi Yolanda, yes I'm sure it does create issues, thanks. Just the question was as to whether there is a psychological "type" that would be more likely to get EDS. I'm not sure.
Nov 22, 2023·edited Nov 22, 2023Liked by Gary Sharpe
After years of trial and error with various doctors and meds for POTS I was prescribed a low dose of florinef by an electrophysiologist. It was life changing. He prescribed it to retain salt but after research I found out it is also used for adrenal issues. It has been a game changer for me! My hope is to continue to heal and eventually get off of it. Great article.
The doctor who prescribed it didn’t mention Addisons. However through previous testing with Dr Saperstein at the EDS clinic in Phoenix I tested negative for Addisons. Note: both doctors did tilt table and diagnosed POTS. Saperstein was more specific calling it hyperPOTS. Beta blockers made me more tired, one causing some serious blues for me.
I get that, but it gives us another possible link and pointers to stress being common causes... maybe something we can learn by looking into it... Indeed. a quick search says about Addison's "In some cases — such as after an injury or severe illness or time of intense stress — symptoms can come on quickly and cause a life-threatening..."
I 100% believe it’s stress related. Some due to EDS and comorbitites but much “self” induced. Past abuse, raising kids, lack of sleep. Being a worrier. The two fight each other constantly. I have done a lot of research and a lot of healing. Currently on a hiking trail. Every day is a blessing and everyday I work at wellness and educating myself more to not go backwards.
I see this 💯 in my daughter - diagnosed with all ..HEDS, gastroperesis, migraines POTS, iron deficiency, chronic pain, fatigue , chronic constipation, anxiety , etc. We see the adrenaline surges - we identify the stressors and how it all impacts the cycle . Interestingly enough .. started Low Dose Naltrexone. Which increases dopamine
Interesting, I hadn't realized there is a link between LDN [[which some folks with PD diagnosis also may find beneficial] and dopamine. I will look into this.
Gary, i so agree with you, on all counts. Also, since no internet at home (NO WAY JOSE!) it takes longer to get through our posts.
If anyone wants to know about EDS, i am the one to ask - because my education took 35 solo years of decoding my own neurologically-hyper-activated system and chronic dislocation injuries. (diagnosed at age 20 with typical hysteria and mentalizing maladies/ left the medical system then ince and for all!)
Everything i learned and logged (in my own body) was confirmed by my own research then, finally, once i had it figured out. NOBODY knows about this issue, but hypermobile EDS (hEDS) is agonizing and chronically limiting. i've only been able to write a little about it, because - well - it's always too close to home.
ELECTROSENSITIVITY, and all other subtle awarenesses, peak in this nervous system type.
True canaries...
BOY DO I KNOW FASCIA, every bit of it, esp the density/intensity/connectivity of its neural webwork...
ok, all for today. i will comb your links in parts, since i will be reading offline the rest of the day.
I hear your Parkinson's.... I am autistic with EDS that was diagnosed in my 40's after an adverse antibiotic reaction. It seems that my body doesn't produce the right amount of progesterone in order to counter the estrogen. I am fortunate to not have needed surgery (like the other females in my family) because I supplement progesterone. If progesterone is too low, then active T4 does not convert to active T3, so hypothyroidism ensures. And so many dislocations, and lack of dopamine symptoms, like anhedonia and ocd stuff.
The only reason I was able to recover some function is due to the amount of progesterone that I supplement, and the amount of dopamine enhancers like l-tyrosine, etc. I finely found some information about progesterone supplementing... basically increase amount until the symptoms are less or stop. What set me on this journey was finding an official document about hormone modulation for EDS. Different symptoms required different tactics. Except that I can't find this article anymore.
Hi Laura. glad you found a practical solution. I remember seeing an older doctor doing the podcast rounds who had figured out the progesterone link, and had invented a cream you could apply topically, totally ignored by other doctors. Can't find it now. Conversely, There is also prolactin which works against dopamine -not sure how it relates to progesterone.
My prolactin is normal. It was tested twice because I still lactate. Apparently if progesterone is too low compared to prolactin, then lactation occurs. I am of French ancestry so maybe my healthier ancestors had lots of babies.
I don't have doctor help exactly, and I am too poor to go through the private system. I do, however, belong to several FB groups of an EDS or chronic illness nature, and I get to hear what their specialists have to say.
Thanks to both you and Lilian for raising awareness how all this is connected and for providing viable solutions. Allopathic medicine might never catch up, but perhaps people will learn where to seek appropriate care.
You've landed in the same place as me with my FMS gone mad and insulin resistance. Strangely, I was also "double jointed" in some joints as a child, and still have some joints that hyper-extend (although I am not long and lean). So these are all fitting into a big picture, and all roads seem to lead to stress hormones. I have not yet wrapped my head around when we produce adrenaline in our brains and when we produce adrenaline and cortisol from the adrenal glands. I am presuming only the adrenaline (epinephrine) produced in the brain steals the dopamine. Do you have links to medical articles on this? Obviously this is my next area of research.
(As a PS, concentrated velvet bean has improved my FMS and long covid stiffness and pain enormously.)
Currently I am working on reducing cortisol levels (not adrenaline I think) with this Huberman breathing exercise.
Now how much use this is downstream I am yet to discover, but it seems to be a good start. And did you know that tears actually carry cortisol out of the body? Seems like they are a good idea for stress release also although less easy to manage than the breathing exercise.
I don't have any science journals to hand, but Huberman should point to his sources for this https://www.outthinkingparkinsons.com/articles/dopamine . Yes made from dopamine in the body too. 50% of the dopamine is in the body, mainly the gut.. but the kidneys and retiina [eyes] too,,
Neat little article on dopamine and cortisol. It's not just adrenaline that steals dopamine. So does cortisol. And it goes both ways. A shortage of dopamine will lead to a higher than normal production of cortisol to compensate, which in turn depletes dopamine further. Very thorough website, by the way.
Along different but similar lines, I have long thought that if steroids are the treatment for so many different diseases -most autoimmune conditions, Inflammatory bowel disease, Rheumatoid, etc, surely they must share the same cause...
Interesting stuff, Gary
Thanks. How would EDS fit with the Riechian Archetypes [narrow elongated faces and limbs???]
I do get clients asking me if hypermobility has a psychological cause or aspect. But I'm not sure TBH.
Devaraj, it def creates psychological issues - there's chronic underlying instability and the body is constantly gripping "here" and "there" in a desperate attempt to hold its joints together. Physical "instability" is also mental "instability". There's constant self-doubt, and fear of planning things because once the pain starts, all bets are off.
All that alone makes you crazy! But then there's the lifetime of being gaslit- or hiding away - and never being able to fully participate in life...
and the physiological anxiety of a highly activated SNS, day in and day out...
Hi Yolanda, yes I'm sure it does create issues, thanks. Just the question was as to whether there is a psychological "type" that would be more likely to get EDS. I'm not sure.
Thank you Gary....a very interesting read
After years of trial and error with various doctors and meds for POTS I was prescribed a low dose of florinef by an electrophysiologist. It was life changing. He prescribed it to retain salt but after research I found out it is also used for adrenal issues. It has been a game changer for me! My hope is to continue to heal and eventually get off of it. Great article.
Interesting. I looked it up, and it mentioned Addison's Disease - another rabbit hole for me to go down.
The doctor who prescribed it didn’t mention Addisons. However through previous testing with Dr Saperstein at the EDS clinic in Phoenix I tested negative for Addisons. Note: both doctors did tilt table and diagnosed POTS. Saperstein was more specific calling it hyperPOTS. Beta blockers made me more tired, one causing some serious blues for me.
I get that, but it gives us another possible link and pointers to stress being common causes... maybe something we can learn by looking into it... Indeed. a quick search says about Addison's "In some cases — such as after an injury or severe illness or time of intense stress — symptoms can come on quickly and cause a life-threatening..."
I 100% believe it’s stress related. Some due to EDS and comorbitites but much “self” induced. Past abuse, raising kids, lack of sleep. Being a worrier. The two fight each other constantly. I have done a lot of research and a lot of healing. Currently on a hiking trail. Every day is a blessing and everyday I work at wellness and educating myself more to not go backwards.
Gary, it's brilliant how you decided to lay out this series.
i never "needed" all that "research" for what i intuitively knew and felt - but most people do - and this will clarify so much for them.
"Everything is neurological"; trauma underlies all chronic conditions; and it's all about ANS balance. We so agree!
i've loved learning more about dopamine too - i never gave it nearly this much thought
Thanks - this means a lot coming from you.
I see this 💯 in my daughter - diagnosed with all ..HEDS, gastroperesis, migraines POTS, iron deficiency, chronic pain, fatigue , chronic constipation, anxiety , etc. We see the adrenaline surges - we identify the stressors and how it all impacts the cycle . Interestingly enough .. started Low Dose Naltrexone. Which increases dopamine
Interesting, I hadn't realized there is a link between LDN [[which some folks with PD diagnosis also may find beneficial] and dopamine. I will look into this.
Gary, i so agree with you, on all counts. Also, since no internet at home (NO WAY JOSE!) it takes longer to get through our posts.
If anyone wants to know about EDS, i am the one to ask - because my education took 35 solo years of decoding my own neurologically-hyper-activated system and chronic dislocation injuries. (diagnosed at age 20 with typical hysteria and mentalizing maladies/ left the medical system then ince and for all!)
Everything i learned and logged (in my own body) was confirmed by my own research then, finally, once i had it figured out. NOBODY knows about this issue, but hypermobile EDS (hEDS) is agonizing and chronically limiting. i've only been able to write a little about it, because - well - it's always too close to home.
ELECTROSENSITIVITY, and all other subtle awarenesses, peak in this nervous system type.
True canaries...
BOY DO I KNOW FASCIA, every bit of it, esp the density/intensity/connectivity of its neural webwork...
ok, all for today. i will comb your links in parts, since i will be reading offline the rest of the day.
I hear your Parkinson's.... I am autistic with EDS that was diagnosed in my 40's after an adverse antibiotic reaction. It seems that my body doesn't produce the right amount of progesterone in order to counter the estrogen. I am fortunate to not have needed surgery (like the other females in my family) because I supplement progesterone. If progesterone is too low, then active T4 does not convert to active T3, so hypothyroidism ensures. And so many dislocations, and lack of dopamine symptoms, like anhedonia and ocd stuff.
The only reason I was able to recover some function is due to the amount of progesterone that I supplement, and the amount of dopamine enhancers like l-tyrosine, etc. I finely found some information about progesterone supplementing... basically increase amount until the symptoms are less or stop. What set me on this journey was finding an official document about hormone modulation for EDS. Different symptoms required different tactics. Except that I can't find this article anymore.
Thank you for your work.
Hi Laura. glad you found a practical solution. I remember seeing an older doctor doing the podcast rounds who had figured out the progesterone link, and had invented a cream you could apply topically, totally ignored by other doctors. Can't find it now. Conversely, There is also prolactin which works against dopamine -not sure how it relates to progesterone.
I guess I meant to say that MCAS is the root of my afflictions, including insulin resistance (I am a type 1 diabetic). Currently reading this book in order to find the bigger picture: https://www.amazon.ca/Never-Bet-Against-Occam-Activation-ebook/dp/B01CZUBNL2/ref=sr_1_1?crid=35KEIXOHEL1Q2&keywords=lawrence+afrin&qid=1699466544&sprefix=lawrence+afrin%2Caps%2C148&sr=8-1
My prolactin is normal. It was tested twice because I still lactate. Apparently if progesterone is too low compared to prolactin, then lactation occurs. I am of French ancestry so maybe my healthier ancestors had lots of babies.
I don't have doctor help exactly, and I am too poor to go through the private system. I do, however, belong to several FB groups of an EDS or chronic illness nature, and I get to hear what their specialists have to say.
Thanks to both you and Lilian for raising awareness how all this is connected and for providing viable solutions. Allopathic medicine might never catch up, but perhaps people will learn where to seek appropriate care.
Thanks for the support.
You've landed in the same place as me with my FMS gone mad and insulin resistance. Strangely, I was also "double jointed" in some joints as a child, and still have some joints that hyper-extend (although I am not long and lean). So these are all fitting into a big picture, and all roads seem to lead to stress hormones. I have not yet wrapped my head around when we produce adrenaline in our brains and when we produce adrenaline and cortisol from the adrenal glands. I am presuming only the adrenaline (epinephrine) produced in the brain steals the dopamine. Do you have links to medical articles on this? Obviously this is my next area of research.
(As a PS, concentrated velvet bean has improved my FMS and long covid stiffness and pain enormously.)
Currently I am working on reducing cortisol levels (not adrenaline I think) with this Huberman breathing exercise.
https://www.youtube.com/watch?v=kSZKIupBUuc&t=10s
And I have tested whether it works using this little test. It does.
https://www.youtube.com/watch?v=jzEaCdMvYp0
Now how much use this is downstream I am yet to discover, but it seems to be a good start. And did you know that tears actually carry cortisol out of the body? Seems like they are a good idea for stress release also although less easy to manage than the breathing exercise.
I don't have any science journals to hand, but Huberman should point to his sources for this https://www.outthinkingparkinsons.com/articles/dopamine . Yes made from dopamine in the body too. 50% of the dopamine is in the body, mainly the gut.. but the kidneys and retiina [eyes] too,,
Neat little article on dopamine and cortisol. It's not just adrenaline that steals dopamine. So does cortisol. And it goes both ways. A shortage of dopamine will lead to a higher than normal production of cortisol to compensate, which in turn depletes dopamine further. Very thorough website, by the way.
https://medium.com/@EricBravermanMD/dopamine-and-cortisol-6662cd5cac7f
woah! sounds interesting - I will read now!
Thank you for sharing all this great information @Gary ❤️
Along different but similar lines, I have long thought that if steroids are the treatment for so many different diseases -most autoimmune conditions, Inflammatory bowel disease, Rheumatoid, etc, surely they must share the same cause...