Hi All,
I signed up here a year ago and started to work the structural education program. I found the journaling very triggering at the time, which is why I think I didn't continue. I then went on to really do some research on physical symptoms I was having. I was a medical mystery to my neurologist, and I had been to many doctors to try to uncover why I was having so many issues, including pain. I actually have a network of small, pea-sized knots under my skin, throughout my body, many which are very painful. I eventually found an article for Dercum's Disease, and contacted a specialist (one of the few in the world) for a consult to see if I have this rare disorder. It turns out I actually do, and I was also diagnosed with hypermobile Ehlers Danlos Syndrome (hEDS), Lipedema, and Mast Cell Activation Disease. I'm currently seeing a functional medicine practitioner who thinks I also have an autoimmune disease, possibly Hashimoto's Thyroiditis (I get results this week).
I'm writing because although I finally have some 'answers' as to why I have all these physical manifestations of illness in my body, I still feel that it is the pattern is related to emotions/trauma, and that my body has gotten sick due to dysfunctional brain patterns that limit my body's ability to heal. In fact, I was told I have a type of Dercum's Disease related to a healing disorder, where the connective tissues are inflamed and the state is activating mast cells that then in turn lead to growths of lipomas throughout the body. These lipomas actually wrap around nerves, causing pain, tremors, and other physicals issues. The disease can apparently be very serious and lead to immobility, as the connective tissues break down and the muscles weaken in the disease process.
I also have high EBV levels, even though I had mono some 34 years ago. My doctor told me I have a reactivated virus and suggested a book by a woman who helps treat sufferers holistically. I read that so many people with chronic illnesses have had EBV or other similar triggering events that affected the immune system. If stress and trauma cause the body to run in a hypervigilant "fight or flight" state that gets switched on but can't be easily switched back off, then it is reasonable that the body will start to become ill. But if the state is perpetuated by neurochemical reactions and pathways, it should also make sense that it can be corrected by changing these pathways. That should be true of any illness, I suppose. I'm holding on to this hope, but I also feel quite overwhelmed and almost am over being diagnosed with another thing. I used to long for validation that my symptoms were 'real' and now I see how tricky it is to be told you are really sick. It's no longer in my head, but now it's harder to claim and fix through the power of the mind, because doctors have confirmed I'm really ill.
I used to think that it was an either/or situation where either my pain was caused by 'real' illness or it was just a pattern in the brain making me feel unwell when I could be enjoying good health. It may not make sense, but I'm wondering if it is both. I have physical pain and dysfunction attributable to some measurable, defined illness(es), but I also have brain patterning that caused these problems to form. I'm told there are no cures for these illnesses, and some of them have severely disabled people. I've been resistant to accept this information, as I believe it may be possible to change the state I'm in through changing my beliefs about why I'm experiencing these conditions.
I don't want to venture too far from the platform, here, but I want to ask if anyone has thoughts on how to follow this type of work while also actively participating in treatments for diagnosed illnesses. Is there a balance where you just take care of yourself in a way that doesn't feel 'serious'... like brushing your teeth at doesn't feel serious but is just something you do for health... while not 'buying into' a diagnoses that could self-perpetuate illness?
I hope this post makes sense!
Thanks
KM108
I signed up here a year ago and started to work the structural education program. I found the journaling very triggering at the time, which is why I think I didn't continue. I then went on to really do some research on physical symptoms I was having. I was a medical mystery to my neurologist, and I had been to many doctors to try to uncover why I was having so many issues, including pain. I actually have a network of small, pea-sized knots under my skin, throughout my body, many which are very painful. I eventually found an article for Dercum's Disease, and contacted a specialist (one of the few in the world) for a consult to see if I have this rare disorder. It turns out I actually do, and I was also diagnosed with hypermobile Ehlers Danlos Syndrome (hEDS), Lipedema, and Mast Cell Activation Disease. I'm currently seeing a functional medicine practitioner who thinks I also have an autoimmune disease, possibly Hashimoto's Thyroiditis (I get results this week).
I'm writing because although I finally have some 'answers' as to why I have all these physical manifestations of illness in my body, I still feel that it is the pattern is related to emotions/trauma, and that my body has gotten sick due to dysfunctional brain patterns that limit my body's ability to heal. In fact, I was told I have a type of Dercum's Disease related to a healing disorder, where the connective tissues are inflamed and the state is activating mast cells that then in turn lead to growths of lipomas throughout the body. These lipomas actually wrap around nerves, causing pain, tremors, and other physicals issues. The disease can apparently be very serious and lead to immobility, as the connective tissues break down and the muscles weaken in the disease process.
I also have high EBV levels, even though I had mono some 34 years ago. My doctor told me I have a reactivated virus and suggested a book by a woman who helps treat sufferers holistically. I read that so many people with chronic illnesses have had EBV or other similar triggering events that affected the immune system. If stress and trauma cause the body to run in a hypervigilant "fight or flight" state that gets switched on but can't be easily switched back off, then it is reasonable that the body will start to become ill. But if the state is perpetuated by neurochemical reactions and pathways, it should also make sense that it can be corrected by changing these pathways. That should be true of any illness, I suppose. I'm holding on to this hope, but I also feel quite overwhelmed and almost am over being diagnosed with another thing. I used to long for validation that my symptoms were 'real' and now I see how tricky it is to be told you are really sick. It's no longer in my head, but now it's harder to claim and fix through the power of the mind, because doctors have confirmed I'm really ill.
I used to think that it was an either/or situation where either my pain was caused by 'real' illness or it was just a pattern in the brain making me feel unwell when I could be enjoying good health. It may not make sense, but I'm wondering if it is both. I have physical pain and dysfunction attributable to some measurable, defined illness(es), but I also have brain patterning that caused these problems to form. I'm told there are no cures for these illnesses, and some of them have severely disabled people. I've been resistant to accept this information, as I believe it may be possible to change the state I'm in through changing my beliefs about why I'm experiencing these conditions.
I don't want to venture too far from the platform, here, but I want to ask if anyone has thoughts on how to follow this type of work while also actively participating in treatments for diagnosed illnesses. Is there a balance where you just take care of yourself in a way that doesn't feel 'serious'... like brushing your teeth at doesn't feel serious but is just something you do for health... while not 'buying into' a diagnoses that could self-perpetuate illness?
I hope this post makes sense!
Thanks
KM108
