Sufferer PTSD with Ehler's Danlos Syndrome

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Hi-I'm new. I've started my healing journey with PTSD, but EDS makes it ridiculously hard to be consistent-with anything. I know healing isn't linear by any means, but EDS causes many minor and some major set backs.

Aside from many chronic illnesses, I have been suffering my whole life with what I now know to understand as CPTSD. I've been in weekly telehealth therapy since 2019.

I also have Panic Attack Disorder with Agoraphobia and so keeping up with doctors appointments and phone calls is very hard to do. I suspect I am on the spectrum as well. I've never publicly self identified as autistic, but it would connect A LOT of dots. Idk if it's so important to go through the list of issues that I am diagnosed with necessarily, but my CPTSD (emotional dysregulation, triggers, overstimulation, processing dysfunction, basic executive function) has made it extremely difficult to have a quality of life that I crave or the quality of relationships that I also crave.

I struggle a lot with abandonment which I cannot emphasis enough. I've always wanted close relationships with people, but I am only learning how to be vulnerable and practice regulating my emotions as the situations come at almost 32 years old. I know I have a lot to offer this world, but I am so shut inside of myself, as I was taught to be. It's just really difficult to do anything past a computer. I'm not even great at forums. I've tried keeping up with theMighty, which is an amazing place to read very relatable content, but I've found that I tend to socially withdaw on that platform instead of embracing communication and I'm not sure why.

I have been grueling myself over psycho-educating my brain on CPTSD and how it's impacted ENTIRE life. I just learned that PTSD is not a mental illness, but brain trauma. I think that alone has actually helped me so much bc I can say I'm not fcked up, it's my CPTSD or I'm not fcked up, I'm dysregulated and so forth. There is a reason that I'm not okay. It isn't just me being a pathetic loser, I just have a lower tolerance bc of CPTSD. Just like with EDS, it's freeing to know that there is a condition for the ways that I have seen myself as a loser or failure.

My perspective has grown so much in just a few short months that has brought me relief I never thought I'd experience. It's made me ready to take this seriously and I'm ready for the responsibility of healing. In fact, there is nothing else I can focus on, especially due to the peak of my mental and physical health decline since 2019, when I could no longer work. I am in the process of applying for disability, which is a nightmare in itself. The mental toll that it has taken on me, being so young and having nowhere else to turn to, I have to get help from somewhere. It's all too stigmatized for anyone that I know of in my immediate vicinity or "family" to want to understand, even at a surface level, what I'm going through. It's a very lonely thing.

I've been with my high school sweetheart since we were 16 and he is literally the only emotional support I have. I have one sister who lives states away, another who is local but keeps her distance, and I had to cut ties with my parents years ago due to the abuse they put me through.

I am in touch with my partner's family, but they are also so emotionally abusive, which is so triggering for me to be around. I can sniff out emotional abuse and can only take so much of being exposed to that when it's happening to kids of the family when the care takers are completely oblivious to what emotional abuse even is. I grew up where it was normal to be bullied by one of my care takers. And so, my contact is very limited partly because I have not figured out how to dampen the trigger response to seeing someone be mentally abused to the other, particularly when there's kids involved going through exactly what I went through that landed me a PTSD diagnosis.

I'm pretty bound to my bubble until I can learn to regulate myself in situations that trigger me and my body's somatic responses to trauma.

Anywho, that's just a tid bit so, Hi and take care.
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Hi @PawPrintHeart , welcome to you!

^^ May I ask how you find this interplays? (4 of us seem to have it, well 3 confirmed).

PS, that is a sweet name! ☺️🐾
I think the stress makes my body issues worse. I have fibromyalgia as well and this puts me in chronic pain and swelling. I have noticed that my anxiety and stress sort of feed my body issues. When I'm triggered or nervous, I tend to shake a lot. This can be strictly muscular, but it also feels neurologic, like I'm getting zapped in my spine. It sort of feels like a tense unit on low going throughout my entire spine. It can maintain a low tense unit vibration sensation or it can crank up pretty badly to where I have to have my partner bring me medicine because I'm afraid moving will exacerbate it (dystonia). The vibration alone can cause intense muscle spasms that sublux my ribs, make my teeth chatter, and my neck and shoulders draw up. My muscles turn to bricks as hard as they tense up. It's awful and sometimes scary during these episodes. These are normally signs that I have been over exposing myself to stress, or have physically overdone. I really try my best not to let it get that bad. I found an amazing article that I've been reading. It's kind of long, but it really puts perspective on all of the ways a person with PTSD can experience long term body issues. I think the EDS just exacerbates these symptoms to some degree and the degree is unknown as the symptoms from EDS are very inconsistent. I only have Hypermobile EDS, so I can only speak to my own personal battles. Maybe these are relatable? Understanding the Impact of Trauma - Trauma-Informed Care in Behavioral Health Services - NCBI Bookshelf

Hi @PawPrintHeart - welcome to the forum. I've added some paragraph breaks to your post, to make it easier to read.

If you have any questions about how the forum works, please feel free to reach out to staff by posting in Contact Us. Otherwise, just reading around is a great way to get familiar with navigation, etc. Glad you found us.
Thank you. I actually found this forum mentioned in the book I'm currently combing through by Pete Walker, CPTSD: From Surviving to Thriving. I'm happy to be here. :)
Thank you @PawPrintHeart , I understand. I haven't read the article yet. I did not know EDS existed and ignored whether I had it or not for probably 10+ years as soon as I heard there's no cue for it. It explains a lot but causes a lot of problems the older I get, some are kind of weird, and nothing like I realized. Other than the pain and energy drain I always thought of my body separate from other challenges. Just that it drains the energy needed to manage the other challenges.

Thank you! Best wishes to you!
Hi-I'm new. I've started my healing journey with PTSD, but EDS makes it ridiculously hard to be consistent-with anything. I know healing isn't linear by any means, but EDS causes many minor and some major set backs.
Hi, I hear you and you are not alone. I also suffer from CPTSD as well as ADHD/Autism and I finally just got my EDS diagnosis. While yes, I did experience some pretty series childhood trauma, I know others who have had it worse and always wondered why it didn't stick with them like it did with me. Understanding that CPTSD isn't directly connected to how severe the trauma is or how much strength one has to fight it but rather the structure of the brain was an eye opener for me. Hugs to you.
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And the EDS explains a lot of things that I wouldn't have known, the dislocations (not just 'clutzy'), the cold intolerance (not just a 'sissy'), the super-sensitive skin (not just 'me' or allergies), the headaches, the veins (not just because of muscle or thin), the translucent skin (not just age), the difficulty swallowing, the scar tissue and bumps (not just 'weird'), where I have creping (not weight loss or carrying a lot of weight) etc. So I don't like it and it's not pretty but in a way it makes a lot more sense, as does the pain and fatigue, and the early arthritis being inevitable if you were active. Though how it affects the autonomic nervous system my sister has had more problems with. It required a recessive gene from both parents so what are the odds? Though I think it's more common than realized/ not as rare as they think, just unrecognized. I do know they recommend not jogging, avoiding elective surgery and heavy lifting. I can't say I find it affects my mind except for the energy drain or pain (stress cup), and how I view myself when I pay attention to it. Tbh though it's not like I'm going to try to explain it to anyone. There's probably a lot of invisible things people have or visible-but-unseen.
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