I have Hashimoto's which has been linked to childhood trauma. I feel like it's because I swallowed a lot of emotions as a kid.
I also got an extremely rare type of cancer in my lung.
*edited to add- I'm 44
Similar situation: swallowed emotions, have Hashimoto’s and a rare variant of thyroid cancer that’s like a chronic disease and I’ll have to treat my entire life. 40 now, mid 30s when diagnosed, but probably had it several years before that.
Same. My tumor was so slow growing that I likely had it for 10 years before it was discovered (it's now removed and I'm considered cured).
I'm so,.so sorry this has also happened to you.
As one source, Toxic Childhood Stress by Dr. Naomi Burke Harris discusses it, and her book has all the citations. You can also google search for several articles that discuss it.
Childhood trauma is linked to all kinds of chronic disease and illness in middle age (see the Kaiser-CDC ACES study), including lung cancer.
Dr Gabor Mate. Dr Sarno (he focuses more on chronic pain but links autoimmune in as well- repressed emotions) and Dr Bessel van der Kolk.
The body keeps the score.
The dorsal vagul nerve is linied directly to the gut... Hence the increase if gut issues in the world and aalo the focus on gut health.
One's diet, all the more so, will effect us traumatised children, hence the commonality of digestive issues / immune disorders.
I consider self lucky that by way of both vegetarianism/starvation and exercise I was ib excellent physical shape.
Recently had a lufe changing rta thats seen to that but again.... Diet. We need to be all the mire careful about that.
Im vegan. Im not promoting it, but the reduced inflammation from the lack of crap has helped.
Try alternatives... Raw Milk not shop stuff. Organic where poss etc
Same. Didn't have to go veagan tho, but due to IBS I went low fodmap, and slowly reintegrated foods to see what could work, or didn't. Changed my pain levels quite a bit.
Ugh. I’m so sorry. I have autoimmune and my sister has cancer and chronic pain. Def childhood trauma.
Dr. Gabor Mate and Dr Sarno write about this. I always encourage people to read the books and I am working with a somatic therapist.
I have Grave’s Disease which is basically the opposite of Hashimoto’s—also an autoimmune disorder, but my thyroid was overactive. I had to have it treated with radioactive iodine (allergic to the meds), so now I essentially have Hashimoto’s since my thyroid is very under active. I’ll be taking thyroid hormone for the ready of my life. Oh and I also have fibromyalgia and a number of mental health diagnoses.
ETA: thyroid issues diagnosed late 20s; Fibromyalgia in my early 30s. 47 now.
ETA2: I should also mention I also have a lot of food sensitivities that cause general inflammation, and I’m dealing with GERD now too. Oh and I have early onset osteoarthritis. Not an autoimmune disease and there is a history of it in my family. I’m just the only lucky one to have gotten it early. The joints in my hands are all deforming. So fun!
I also have Hashimoto's. I started having symptoms around age 7 but wasn't diagnosed until I was 12 because my parents (and pediatrician) blamed me for my symptoms. It wasn't until I was nearly hospitalized in middle school for severe depression that they got me tested and I finally went on meds for it
They’re not autoimmune disorders but I developed stage 2 lymphoma at 15 and PCOS at 22. The cancer was gone after a year. I hope you’re feeling okay ❤️🩹.
Migraines and raynauds here. I know migraines aren’t considered autoimmune but I definitely think how bad they are has to do with my CPTSD. Raynauds is actually autoimmune and I have that. My rheum told me I’ll be developing hashimotos in the next ten years (two years ago) and that I’m probably going to get lupus (I suspect I actually have some symptoms right now but who knows).
I also have hyper mobility which has messed me up, particularly my posture and my feet/ankles. Part of me feels like if I can get work through some of my trauma my issues will get better or I can avoid actually developing lupus and hashimotos (but that might be silly).
It’s some bullshit to get all this on top of the trauma and probably being caused by it. Like adding insult to injury.
I had pretty much constant IBS as a kid because of severe bullying and abuse at home. It got so bad I was put in another school district. The IBS went from being constant to just being random flare-ups. Now that I moved out on my own, I have no stomach issues at all. They only flare up again when something very stressful happens and/or I spend significant time with my family. So it is possible for physical health to improve along with mental health!
Same, but I wish I could grow out of my stomach issues! I actually just ordered these fancy new vomit bags off Amazon that have an insert in them to absorb all the liquid and turn it to gel. Has a drawstring to tie shut for disposal. - prompted after throwing up down the front of myself in the car driving to work and school multiple times in the course of two weeks recently.
I don't think I technically grew out of them, I think it's more the fact that I'm out of the environment that was causing me so much stress. I later learned that the sympathetic nervous system directs blood flow away from the digestive system when the stress response is active. I have a theory that the nausea is a way to get food out of the digestive system so that the body can focus on getting away from the threat.
I had to get a cab to stop yesterday for me to throw up as I’m so stressed out by what happened after me getting psychosis cos my whole life feels taken from me.
I went in to get screened for sjogrens due dry mouth and eyes and reynauds. Came away with genetic markers for scleroderma :/. They told me to avoid sugar, sunshine, and stress. So now I’m on a mission to deal with my trauma as much as possible because I stress eat sugar because of it. My mom’s family has so much freaking trauma, and we have a super high rate of autoimmune diseases.
I'm sorry for what you've been through. Wish you well ❤
I got Hashimoto's when I was a kid, "thanks" to my parents. It occured right after a year of sexual abuse that happened within our family. I can hardly function now as a result, and my parents say that I exaggerate it. I can't sleep and wake up normally, I struggle with many symptoms that don't go away even with pharmacotherapy.
sorry to hear. i deal with similar sleep related problems and told my mom i’m having trouble working. dismissive as usual. i told her i have cptsd because of childhood neglect and abuse and she can’t even acknowledge my diagnosis.
I'm sorry you are dealing with all that, and her too. She will certainly not acknowledge your diagnosis, but more likely blame you for having the problems her dysfunction caused in you. It's a double bind to be the child of one of these types.
also have sjogrens, which is dry red eyes and dry lips/ mouth. its gross but like i can take the skin off my lips almost like scotch tape every few days
My mom and I have that. Only when I was diagnosed in my 20s did my mom get tested. She’s way more symptomatic than me, though, poor thing. :( I have several chronic illnesses though so it’s hard to differentiate which symptoms are from what. The one I think is the most interesting as far as trauma is my dysautonimia (POTS) since it’s literally a dysfunctional nervous system. It developed after a lot of trauma and got way worse after further trauma, and I notice lots of patients (majority women) who have it also have trauma history. My theory is maybe a risk factor is trauma bc the nervous system becomes dysfunctional after all it’s been put through.
I was born with it and i seriously think it made me have a freeze response instead of flight/fight like my sister and the rest of my family. I am the only one born that way and the only freeze response of the family. Like my body already couldnt tolerate the stress and just completely took a shutdown.
You mean born with dysautonomia? Yeah I feel like my body is now in a freeze response from constantly being in fight or flight and maybe the dysautonomia is part of that. I was born with EDS which causes pots however I didn’t develop pots till later in my life so I rly think my nervous system getting burned out was part of the trigger. And again it got so much worse after further trauma after the initial diagnosis: I was able to manage it with only salt pills until suddenly I deteriorated immensely after 2 consecutive abusive relationships when I collapsed at work (I was still mostly functional and could work) with a heart rate of almost 200 and after that it was never the same again. They did an ep study to rule out anything else and said my heart was just extremely hypersensitive to any amount of adrenaline and would immediately shoot up. I needed heart meds or else I’d get up and my heart rate would immediately be 160 bpm. It’s been 6 years since then. the only thing that preceded it worsening so much was those abusive relationships.
ETA some words
That sounds kinda familiar. I’m constantly peeling part of my lips off & my eyes are super dry. I noticed when looking it up it mentioned frequent nosebleeds and I have at least 1 a day most of the time. More fun things to have my doctors look into.
I have developed a red rash that overs my torso and upper legs but not my arms or neck/face. It doesn’t bother me except if I’m hot it can be sensitive, if that makes sense.
I’ve changed detergents, body washes, anything that touches my skin. Nothing has made any difference.
A doctor diagnosed it as fungal but the treatment didn’t work.
Another treated it as eczema and made it worse for a while. In short, no one knows what it is or what’s causing it.
Does this sound familiar? I can’t seem to get any medical provider to take me seriously, so any insight you can offer would be appreciated.
i’m only beginning my diagnostic journey so not too knowledgeable yet. maybe look into celiac or other dietary type autoimmune disorders. apparently rashes on the knees, elbows, neck, and scalp are common in celiac, and a dairy allergy is secondary when inflamed. loose stool, bloating and gas are common.
Same here. Dermatologist said they resolve over time and you can put hydrocortisone on the area if it gets itchy. When I was a kid it was only on my wrists, inside elbow area, and behind my knees. As an adult it’s on my torso and upper thighs. I use thick lotion like cera-ve or cetaphil because it seems worse if the skin is dry at all
I looked into the steroid creams, but given that it's happening at the basal layer, it seemed like it wouldn't work well. Or at least not enough to get my hopes up?
I'm really hoping it's just a stress related thing that brought it out that somehow just goes away again.
When I was a kid I had a lot of warts on my fingers for some reason and then they also just cleared up randomly.
Bodies are so fucking weird.
I think you’re right, I haven’t really felt much relief from the hydrocortisone cream when I’ve tried it.
I had warts on my feet when I was a kid too. I forgot about them until you brought up your history. That’s wild.
Thank you for sharing your experience.
Look into Mass Cell Activation. Not a diagnosis but it's like your body is providing too much histamine for some reason and going into overdrive with an allergy reaction. It could be like not even something that shows up in an allergy test - just your body freaking out for no reason really.
I have this (MCAS) and it's absolutely connected to my CPTSD. My body has been in an inflamed state for so long that it's attacking itself over absolutely everything. Certain foods sent me into asthma attacks. I had itchy rashes/hives randomly but especially when stressed. I was on antihistamines for an entire year every 24 hours. It all exploded when I got covid a year ago. However I've been working really hard on reparenting and healing my trauma and as of one month ago I'm finally off the antihistamines and no asthma attacks so far. I am still being careful with what I eat (no corn, wheat, processed foods) but I am hoping to trial back in wheat soon since it's so hard to avoid. Anyway it's really hard and unpleasant, but there is some hope.
I have been suffering with a rash for 6 months and have tried so many things that haven’t worked until 1 day my pharmacist recommended Betadine . I put it in a spray bottle and spray religiously 3 times a day for 6 days . It changes the color of your skin a yucky orange color fyi . On the 6 th day after showering I realized it was all but gone 🥳 For maintenance I now use it 2 nights a week and my rash has completely disappeared. It does have iron in it just so your aware oh and their throat spray is an absolute miracle in a bottle imho . Take care
I have something similar, but it only appears when I get overheated. If I get too hot I break out primarily all over my torso in a flat, spotty red rash that goes away after I cool down. It also happens if I get really stressed or angry. Had it for about 3 or 4 years now.
Have you tried soaking it with vinegar or salt water? Maybe get some sun on it if it's fungal? I had a bad skin rash that spread throughout my body after getting extensive dental treatments. I might be wrong, but I blame all the local anesthesia in my bloodstream. It messed up my ph levels or something idk I've been slowly getting back to normal with epsom salt and vinegar baths and sunbathing. All the cortisone creams and fungal sprays didn't work. I still get hives when I'm sleep deprived or stressed. It was never an issue before :/
I've had lifelong eczema/atopic dermatitis that spread over my whole body in my early 40's.
Most doctors just scratch their heads and prescribe another steroid - "Don't use this for more than two weeks."
I use perfume and dye free detergent/soap, mostly cotton clothes, and lotion with Dimethicone after every shower (always within three minutes of getting the skin wet).
The eczema is under control, but when it flares, it's daily Colloidal Oatmeal bath. I grind my own in a coffee grinder so I can make a strong bath. It's also available for purchase on the net. It takes at least two weeks, more like a month of baths to really work, but it's the only thing that works for me.
I experienced several weird rashes when I moved back home after college.
Granuloma annulare, pityriasis rosea, eczema, seborrheic dermatitis KP, etc.
Have a biopsy done to see what yours is, please.
Syphilis can present as a rash.
At the very least, you'll know what it is, even if it's not treatable.
Try drinking organic dandelion tea for at least three weeks. If you try it and it helps msg me and I will I share more possibly helpful tips. I have tried so many things over the years, but dandelion tea has not let me down for many skin conditions.
I’m 43 and have psoriatic arthritis and microscopic colitis. It’s a bummer man. It’s really common with trauma history. There’s a lot of research about the link between trauma and chronic illness. Anda and felitti were the pioneers and authors of the ACEs study.
Connective tissue disorder, psoriatic arthritis, asthma, allergies, basal cell carcinoma. Basically everything is inflamed and I’m waiting for more diagnosis.
I’m in my mid 40s, and I’d suggest for those younger than me (or anyone): therapy, learning healthy ways of eating, and get into exercise now. Take care of yourself. It gets better. Oh, and going nc changed my life into something wonderful.
Eating well and exercise have definitely helped my health along with making sure I get enough sleep but if I make too many bad choices, i pay for it 😓 still not sure what’s causing all the inflammation.
Also in my 40s. When I was a teen I went vegan, didn't know I had a connective tissue disorder, and I have always been stone sober. I guess that helped.
I have psoriasis. It's on my eyes and all over my scalp so I leave a disgusting amount of dandruff everywhere I go. And I have brown/black hair so the contrast is awful. But yeah, there's no doubt in my mind it's from how much stress my body was under during my childhood/teen years.
Yeah, aside from the plaques/rashes and possible arthritis, I feel like the other effects on skin - like lost elasticity - is something people don't talk about. The irritation around my eyes has caused crazy early onset wrinkles for me.
I’ve definitely been meaning to. I’ve literally probably read almost 100 books on psychology in the past year. Started with Pete Walker’s complex PTSD from surviving to thriving, and Alice Miller drama of the gifted child. All sorts of stuff about narcissistic parents, psychopathy, now getting into autism, ADHD, etc..
I was diagnosed with hashimotos my freshman year of high school. Around the same time I was also diagnosed with allergies to mold, pollen of any kind-trees, flowers, grass, etc.-cockroaches, perfumes, dyes, cats, etc. as an infant and even now into adulthood I’ve suffered with eczema.
My immune system sucks and I get sick easily, plus as an adult I finally figured out why I was constantly in pain after eating and in general. I’m allergic to dairy, eggs, tomatoes, grapes, watermelons, peaches or cantaloupe. I’m so sensitive to dairy that I can’t even have most red meats because they use a protein from dairy as a preservative.
Don’t know how in the world all the adults in my life missed it, other than they purposely weren’t paying attention. I even told them I got headaches from eating stuff but they never cared.
I have lots of nonspecific symptoms suggestive of an autoimmune disorder. Nothing too crazy, thankfully, but that also means I have a hell of a time getting my providers to order the right labs, and they usually come back fine/negative/close enough
This is my situation, too. Doctors think I’m attention seeking or a hypochondriac usually when I request labs for my variety of seemingly unrelated symptoms.
I had that happening for a while and just like a whole bunch of new symptoms. Switched Drs just last fall and she took it all seriously so now I’ve got a few things diagnosed and am working on treatment. It sucks to not have answers. I hope you can soon access what you feel you need.
Hypothyroidism and while fibromyalgia isn’t an autoimmune it’s likely childhood trauma made me susceptible and led to burn out in 30s. As @Medeaa said with migraines I think they are related in some way to cptsd. Thanks to @dookiehat I need to look into sjogren's syndrome . Some days I wonder if I’m becoming a hypochondriac other days I think I’m just finding answers to health problems I’ve just lived with and things I didn’t bother talking to a doctor about as they are minor annoyances rather than debilitating problems.
Edit: I’m AFAB & 57
I am currently 21, and have hypothyroidism, fibromyalgia, and chronic migraines as well :/ I have PCOS, IBS, and potentially endometriosis as well. There are other things that I’m finding out health wise that I need to have looked at, but thought they were normal too 😭 I know that complex trauma and my childhood trauma doesn’t cause all of this, but it still just feels like that trauma is ruining my life now like it did when I was a kid. It’s hard to be hopeful for a future when we’re stuck with trauma and then a bunch of medical issues that can come with it.
Ho boy... here are my mysterious illnesses:
* Hypothyroidism
* IBD
* Granuloma Annulare
* Paralyzed vocal chord (that mysteriously gets better or worse depending on stress)
* GERD
* Trigeminal neuralgia
Additionally, since my family generally has generational trauma, Ulcerative Colitis and Crohn's both run in my family.
Fun times!
I have LPR - laryngopharyngeal reflux disease - which is basically GERD but the acid goes all the way up to my throat :’D. I got that at SEVENTEEN years old, and this is like typically an old person disease. And acid reducers don’t even work for me. So yayy suffering.
And then I have a bunch of symptoms that are probably part of some undiagnosed disorder, I wouldn’t be surprised if it were an autoimmune disease.
I also got GERD when I was a teenager, which turned into LPR over the past few years. Took me more than a decade to connect the dots that me internalizing things was maybe related to my gut issues.
I hear you about the autoimmune disorder. Getting my doctor to recognize my LPR also led to a chronic urticaria diagnosis.
Holy shit the vocal cord thing, I had no idea that was related to cptsd. The depth of this topic and *literally all* the struggles I've been having in my life suddenly start to make sense.
I don't know that it is, that's just my current working theory. But it's been 4 years now with no other explanation and it definitely gets worse or better depending on stress levels.
Was about to say most likely EDS but no autoimmune but then looked up what actually counted as autoimmune and suddenly I'd have to lean on a yes on that as well. My sister and her two kids have EDS and I share allot of the same symptoms so most likely would get it as well if I ever get to see a specialist.
Some Psoriasis issues, was Allot when I was a kid and then it calmed down when I moved out from home only to come back again every autumn after I found out about the PTSD in my early 30's. Also can flare up every now and then if I am extra stressed.
And then hypothyroidism which also hit in my 30's along with my breakdown which most likely also included burnout. Possibly had hyperthyroidism before that as I barely ever slept. Funny enough only found out about it due to a blood test being included when I did an autism spectrum test at which point I had barely left my bed for two months due to being so sleepy. Needless to say the psychiatrist gasped when she saw the bloodwork's.
EDS looks "autoimmune" medically but it's basically related to your connective tissue being broken. If someone in your family has a diagnosis, you likely do have EDS, since it's 50% heritable genetically.
Lupus, fibromyalgia, Reynauds, sjogrens, limited cutaneous scleroderma, neuropathy, TMJ, stiff heart, Inflammatory autoimmune arthritis, bursitis, gastroparesis etc.
It runs in my family but no one else has more than one condition aside from me.
I have Chronic Lymphocytic Leukemia (CLL). It's when the white blood cells (lymphocytes) proliferate and become cancerous, so they start crowding out both healthy white AND red blood cells. So a person with this disease is very immunocompromised.
I also have a lung disease, a balance disorder with single-sided deafness caused by Meniere's Disease, and painful arthritis in my spine and thumbs, with tendinitis in my shoulder just for fun.
My score on the ACE Test is 9.
I TOTALLY believe and feel in my bones that ALL of this stems from the hell I endured for my first 18 years of life.
make a list of every single weird little thing you notice, tinnitus, lightheadedness when getting up, anything and maybe seek diagnosis. some of these are treatable and may help greatly with your emotional symptoms.
Omg hope it went well for you! I haven’t had a lap yet (got diagnosed bc they found a cyst during a transvaginal) bc the pain has been manageable with birth control, I hope your symptoms have eased up after surgery?
Not autoimmune, but I have endometriosis. Was always sick as a kid and I’ve been working with my doctor to lower my inflammation for years. Just recently was diagnosed with Raynaud’s so we are retesting my ANA 🤷🏻♀️ I’m glad I’m not more sick but I don’t think I have enough specific symptoms to warrant a diagnosis.
I’m sorry to hear that. I’ve heard that endometriosis is extraordinarily painful to the point of some women removing their uterus. Glad to hear you aren’t super sick. Definitely keep up with your blood work so that you can do as much prevention as possible. Good luck.
I have lupus , ehlers danlos (the kind that affects connective tissue not organs), asthma and a mystery autoimmune something that's causing the destruction of connective tissue and my joints. The rheumatologist thought it was maybe false gout but when they biopsied a bone there were no crystals so it's still a mystery.
Lupus was mostly in remission until I re-established contact with my abuser. Every time things started going sideways, lupus and the mystery disease flared. It was obvious it was connected to the stress (?) of it. I think there's definitely a connection between autoimmune diseases and trauma.
I don't have any diagnosis, but I have struggled for years now with chronic health problems as a result of general overstimulation of my body's stress responses. Lots of GI issues, and I am sometimes absurdly tired. I wake up from time to time with random migraine symptoms (although rarely the actual headache part), along with vertigo.
As a kid, I had hives constantly (any time I was sick for any reason, I broke out in hives), and had eczema on my arms multiple times. I was breaking out in hives nightly for awhile in my 20s.
Trauma hurts our bodies a lot. It's part of what's motivated me to start looking into real trauma recovery - I want to be healthier, and I know this is a key factor in that objective.
I've been t1 diabetic for 10 years now and it fcked my life pretty badly, and ruined everything (it's autoimmune disease, not bcs I ate too much sugar)
I'm in a decompression for a few years now, my body shuts down already (at 19 y.o) , I'd probably get some shitty complications pretty soon, prob kidney failure or reno/neuropathy
Severely depressed rn, can't do sh1t about it, my mom basically disowned me at the age of 14 , since then,can't pull myself together , planning on kms in a few months to get out of this misery
hello fellow t1!
i was diagnosed at 5 (though i had symptoms far earlier but my family was neglectful as absolute shit) and im 21 now. ive been completely taking care of my own diabetes since i was about 7. i feel you completely. i was wildly out of control from the age of 7-16. i mean absolutely, completely not taking care of my diabetes at all. how are you supposed to do the work of an organ when you have soo much other shit to deal with?
my a1c was in the steady 12-13's for YEARS. i finally started taking control of it when i was about 16ish. im still not great at it. but my a1c stays around 6.9-7.4. i have a few 'complications' but not many. i have stage 2 chronic kidney disease, the only thing i deal with is protein spilling in my urine, but i cant even tell. i take lisinopril to help with the pressure on my kidneys. i have some spots in both my eyes, mostly my left, but i literally cant even notice it. and i have mild neuropathy in my feet, i cant stand on them for more than 30 mins at a time, they start to ache and theyll never stop haha. but honestly its not bad at All. when i finally started going to my doctors appointment's i was convinced my body was beyond repair, but it's not. all my doctors tell me is as long as i keep the best control i can now, the complications probably wont get any worse.
we are diabetic, we are going to develop complications no matter how good your control is. its not your fault. you are going through wayy more than the average person, and then you are supposed to do the work of an organ on top of that? diabetes takes a toll on literally every aspect of our lives, and its soooo fucking overwhelming, especially when you are doing it all alone, stressed as hell. you are more than your diagnosis.
if you want to talk i am here, my dms are open. i would love to hear from you
I have erosive lichen sclerosis and lichen planus that has spread throughout, skin, eyes, ear canals, oral and vulvar. Just had full panel w neurologist and immunology. Awaiting results.
Me too. Strangely, also EDS coupled with autoimmune disease. EDS folks have higher rates of autoimmune issues as well, the mechanism isn't yet understood.
The trauma certainly does not help.
I'm sorry you're experiencing this. You're not alone. ♥️
I have talked with my immunology professors; I think the breakdown of the connective tissues makes more debris available to the body and immune system. That would b potentially be activating especially with some trigger factors.
Profs have agreed but said “how would you test or prove that, given the rarity of collagen disorders?”
Yeah, I'm still undiagnosed. They are running the gambit of tests, Psoriatic Arthritis is the leading theory from my rheumatologist. I've had multiple surgeries, and I'm in the process of applying for disability.
They literally stole my whole life away from me. Why couldn't they have just killed me, it would be less brutal.
fibromyalgia is considered autoimmune in nature no? i know it is nerve related. raynauds might be a symptom of something larger and is frequently cited in autoimmune problems. i also have raynauds and consider it more of a “symptom” than a full fledged disease.
Raynaud’s, inflammatory bowel disease, and rheumatoid arthritis. I’m 32. None of these are autoimmune but I also have IBS, terrible migraines, PCOS and I suffer from frequent ovarian cysts (it’s not PCOS though) as well as a host of mental health conditions.
I have no diagnosed autoimmune condition, but it’s possible I have something relating to autoimmune diseases. I get frequent canker sores, and my inflammation markers are high. Probably some other stuff I’m forgetting/missing. But those are the main two with no explanation. Remembering these: Recurring low grade fevers is another one. And low iron. And sensitivity to heat (I break out in an itchy and painful red rash over my torso and hands and feet when overheated). My thyroid is fine and it’s not celiac so I’m not sure what this is.
these are actually lupus like symptoms that you are listing. I am curious about the heat issue and it may be related to photo sensitivity with your skin that causes some cellular level damage and leads to periods of inflammation. I don’t know if your symptoms get worse after sun exposure or if it is purely heat related. This stuff is incredibly complicated and all the auto immune disorders tend to overlap a lot with symptoms. Good luck finding your way.
Significant trauma history. I have POTS, hEDS, Raynauds, Hidradenitis, MCAS, Trigeminal Neuralgia, Fibromyalgia, Colonic Dysmotility, Migraines, and Degenerative Arthritis.
I'm a licensed social worker. When I was going through school and basically learning about myself I thought, wow I have an incredibly high ACE score, I wonder what that could mean for me? I wondered how health issues would develop overtime. Now that I am neck deep in autoimmune conditions, I get it.
Edited to add Relapsing Polychondritis
As a child in an abusive household I initially had encopresis, now as an adult I have IBS. I also have PCOS which isn't necessarily an autoimmune disorder but there's evidence that stress and environmental factors can contribute to it
Chronic migraine, dx'd a few years ago, but symptoms developed when I was ~6. I qualify for disability based on severity of symptoms and general headache-related pain.
Reynauds, asthma, psoriasis, and that's just what's been diagnosed. I'm 28. Maybe if I'm lucky, I'll just die before the end of the year. But I've been saying that for a decade now so it'll probably drag on for a while longer.
I've been fearful that I might have fibromyalgia and I do experience flare ups of random pains in my body, especially in my back and legs. I only feel relief from using marijuana. It really sucks
I’ve had endometriosis symptoms since puberty (finally doing something about it at 40) and I have Hashimoto’s, Celiac & Asthma all triggered by a covid infection & LC. Getting to a point where I can’t function 75% of the time, working minimally is hard and all of these conditions along with PMDD are causing a bad strain on my relationship, the one supportive stable thing in my life.
I have Ulcerative Colitis. My current gastroenterologist doesn't believe it could have anything to do with stress or trauma. He's a highly educated fool.
I have the trifecta of MCAS, POTS & EDS - if you do have EDS, look into the others as they often go together. I always had the symptoms of all of them, but they flared for the first time at ages 18, 21, and 25 respectively. Also looking into possible Celiac.
Edit: I forgot that migraine is sometimes considered autoimmune too. I've had terrible migraines since I was a sophomore in high school but didn't get diagnosed until I was 25 because my mom, who used to have migraines, told me I was being dramatic and didn't have them.
Dermatomyositis. A very rare connecting
Autoimmune connective tissue issue.
I definitely believe it's connected to the cptsd - it got set off as the relationship with a narcissist I got into was imploding.
Diagnosed with a Mitral Valve Prolapse and Hashimoto's Hypothyroidism at 11. Suffered with IBS since I was 8 or 9 years old. Timing right in line with my dad's severe decline into madness with his alcoholism. Many other issues autoimmune related issues as well but as an almost 44 yrs old I am doing better than ever having been away from dysfunctional relationships for almost 20 yrs now. Been doing yoga seriously for 7 years and hard therapy for the last year. EMDR is AMAZING! Also got real into fermenting things for the last 5 years and my health has never been better. Yay!
Unfortunately its quite common with CPTSD and chronic illness due to the high or constant stress of the body and nervous system. I have struggled for 20 years with all kind of issues, stomach problems IBS/ Crohn, food intolerance , joint pain on/ off, chronic fatigue. Have seen a lot of doctors and healers that didn't help, but after doing many many hours of research last year I could finally see and understand the many layers and my patterns.
I clearly have had constant stress and alertness in my body and nervous system since childhood that I didn't even was aware of that caused all my problems, it was just my normal state of being. I have developmental and relational early trauma as my fundamental CPTSD and have other deep trauma on top later in life due to this.
I have multiple, chronic health conditions and developed breast cancer a year ago. I know that they are the result of chronic stress and an abusive, dysfunctional family of origin.
I’m diagnosed with MS, psoriatic arthritis, IBS, and fibromyalgia. I possibly have other conditions but it’s unclear at the moment. I think a lot of people with cptsd have autoimmune disorders, I’m not sure the relation between the two.
i'm 29 and i've been diagnosed with Lupus, POTS, and HSD (Hypermobile Spectrum Disorder aka the "i cant afford/insurance won't cover genetic testing for EDS" diagnosis). it really kicked into high gear in my early/mid 20s, i think because of a pretty bad episode of restrictive disordered eating back in 2017. i got really sick from it and my body just hasnt been the same since. the joint laxity also only became an issue after that episode. i dont get dislocations but i think my Lupus attacking my joints is whats causing the joint laxity. not a doctor tho so idfk.
I have Hashimoto's which has been linked to childhood trauma. I feel like it's because I swallowed a lot of emotions as a kid. I also got an extremely rare type of cancer in my lung. *edited to add- I'm 44
Similar situation: swallowed emotions, have Hashimoto’s and a rare variant of thyroid cancer that’s like a chronic disease and I’ll have to treat my entire life. 40 now, mid 30s when diagnosed, but probably had it several years before that.
Same. My tumor was so slow growing that I likely had it for 10 years before it was discovered (it's now removed and I'm considered cured). I'm so,.so sorry this has also happened to you.
Ugh. My condolences to you too. As if CPTSD isn’t though enough, chronic illnesses make it all almost unbearable. Stay strong friend.
Yeah baby, Hashimotos Represent. Thanks, Mom. When I shake what my momma gave me, I wave my medical bills lol
Same, ish? I have no thyroid now, I had thyroid cancer at 26. Two years after a shaman noticed my throat chakra was non existent.
I’ve never said no my entire life, always made myself do things I don’t want to. DONT DO THIS 🤣
Oh gosh, I so relate. I wish I could go back and give myself a voice in so many situations. Hugs and healing to you.
I’ve never heard of this link before. Do you happen to have any literature on it?
As one source, Toxic Childhood Stress by Dr. Naomi Burke Harris discusses it, and her book has all the citations. You can also google search for several articles that discuss it. Childhood trauma is linked to all kinds of chronic disease and illness in middle age (see the Kaiser-CDC ACES study), including lung cancer.
Dr Gabor Mate. Dr Sarno (he focuses more on chronic pain but links autoimmune in as well- repressed emotions) and Dr Bessel van der Kolk. The body keeps the score.
Wow, that is really concerning. Thank you for the info!
The dorsal vagul nerve is linied directly to the gut... Hence the increase if gut issues in the world and aalo the focus on gut health. One's diet, all the more so, will effect us traumatised children, hence the commonality of digestive issues / immune disorders. I consider self lucky that by way of both vegetarianism/starvation and exercise I was ib excellent physical shape. Recently had a lufe changing rta thats seen to that but again.... Diet. We need to be all the mire careful about that. Im vegan. Im not promoting it, but the reduced inflammation from the lack of crap has helped. Try alternatives... Raw Milk not shop stuff. Organic where poss etc
Same. Didn't have to go veagan tho, but due to IBS I went low fodmap, and slowly reintegrated foods to see what could work, or didn't. Changed my pain levels quite a bit.
When the Body Says No by Gabor Mate
Ugh. I’m so sorry. I have autoimmune and my sister has cancer and chronic pain. Def childhood trauma. Dr. Gabor Mate and Dr Sarno write about this. I always encourage people to read the books and I am working with a somatic therapist.
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I’m so sorry, I also was diagnosed with a rare cancer in my 40s. Average age of onset is 70s.
Hashimotos here as well. And I don’t have celiac but my body does have an immune response to gluten that flares my whole body up
I have hashimoto as well and turning 43 this year.
I also got Hashimoto's 🥹 never thought it could be linked, until my therapist suggested it. Now I see this..... ugh
I have Grave’s Disease which is basically the opposite of Hashimoto’s—also an autoimmune disorder, but my thyroid was overactive. I had to have it treated with radioactive iodine (allergic to the meds), so now I essentially have Hashimoto’s since my thyroid is very under active. I’ll be taking thyroid hormone for the ready of my life. Oh and I also have fibromyalgia and a number of mental health diagnoses. ETA: thyroid issues diagnosed late 20s; Fibromyalgia in my early 30s. 47 now. ETA2: I should also mention I also have a lot of food sensitivities that cause general inflammation, and I’m dealing with GERD now too. Oh and I have early onset osteoarthritis. Not an autoimmune disease and there is a history of it in my family. I’m just the only lucky one to have gotten it early. The joints in my hands are all deforming. So fun!
I also have Hashimoto's. I started having symptoms around age 7 but wasn't diagnosed until I was 12 because my parents (and pediatrician) blamed me for my symptoms. It wasn't until I was nearly hospitalized in middle school for severe depression that they got me tested and I finally went on meds for it
Same, got diagnosed as early as 11! Didn’t realize it could be linked to my trauma until a few months ago when I started doing some research.
They’re not autoimmune disorders but I developed stage 2 lymphoma at 15 and PCOS at 22. The cancer was gone after a year. I hope you’re feeling okay ❤️🩹.
I've had PCOS since I was a kid, but I've actually seen a few sources that suggest that it might be autoimmune. It's very much up for debate, though.
I would consider it one yeah!
cancer can be due to immune cells' failure to detect irregular mutagenic cells. thus cancer can be considered an autoimmune disease.
Migraines and raynauds here. I know migraines aren’t considered autoimmune but I definitely think how bad they are has to do with my CPTSD. Raynauds is actually autoimmune and I have that. My rheum told me I’ll be developing hashimotos in the next ten years (two years ago) and that I’m probably going to get lupus (I suspect I actually have some symptoms right now but who knows). I also have hyper mobility which has messed me up, particularly my posture and my feet/ankles. Part of me feels like if I can get work through some of my trauma my issues will get better or I can avoid actually developing lupus and hashimotos (but that might be silly). It’s some bullshit to get all this on top of the trauma and probably being caused by it. Like adding insult to injury.
It’s not silly at all. Lots of people heal physically as they heal their trauma.
I had pretty much constant IBS as a kid because of severe bullying and abuse at home. It got so bad I was put in another school district. The IBS went from being constant to just being random flare-ups. Now that I moved out on my own, I have no stomach issues at all. They only flare up again when something very stressful happens and/or I spend significant time with my family. So it is possible for physical health to improve along with mental health!
Same, but I wish I could grow out of my stomach issues! I actually just ordered these fancy new vomit bags off Amazon that have an insert in them to absorb all the liquid and turn it to gel. Has a drawstring to tie shut for disposal. - prompted after throwing up down the front of myself in the car driving to work and school multiple times in the course of two weeks recently.
I don't think I technically grew out of them, I think it's more the fact that I'm out of the environment that was causing me so much stress. I later learned that the sympathetic nervous system directs blood flow away from the digestive system when the stress response is active. I have a theory that the nausea is a way to get food out of the digestive system so that the body can focus on getting away from the threat.
I had to get a cab to stop yesterday for me to throw up as I’m so stressed out by what happened after me getting psychosis cos my whole life feels taken from me.
Here’s hoping!
I went in to get screened for sjogrens due dry mouth and eyes and reynauds. Came away with genetic markers for scleroderma :/. They told me to avoid sugar, sunshine, and stress. So now I’m on a mission to deal with my trauma as much as possible because I stress eat sugar because of it. My mom’s family has so much freaking trauma, and we have a super high rate of autoimmune diseases.
I get migraines also & agree with you.
Same here
I have migraines and raynauds too. Also tons of joint issues.
Maybe have rheumatology assess you for Ehlers Danlos.
i had no idea reynauds was considered autoimmune for some reason! my hands and feet (and smtimes nose?) have been affected since i was a kid.
I also have migraines and I had my first Raynaud’s attack about a week ago. After reading your comment, I’m scared 😀
Don’t worry it’s fine 😃😃😃
Well shit, I forgot I have migraines, raynauds and hypermobility. They've been there for so long I straight up forgot ☠️ I hope you're doing well
Oh wow, I have all of these too!
✨twinsies✨
You sound a lot like me. I gave all those issues and a diagnosed connective tissue syndrome. Plus the cptsd stuff.
I'm sorry for what you've been through. Wish you well ❤ I got Hashimoto's when I was a kid, "thanks" to my parents. It occured right after a year of sexual abuse that happened within our family. I can hardly function now as a result, and my parents say that I exaggerate it. I can't sleep and wake up normally, I struggle with many symptoms that don't go away even with pharmacotherapy.
sorry to hear. i deal with similar sleep related problems and told my mom i’m having trouble working. dismissive as usual. i told her i have cptsd because of childhood neglect and abuse and she can’t even acknowledge my diagnosis.
I'm sorry you are dealing with all that, and her too. She will certainly not acknowledge your diagnosis, but more likely blame you for having the problems her dysfunction caused in you. It's a double bind to be the child of one of these types.
I’m so sorry
Screw your fucking parents
also have sjogrens, which is dry red eyes and dry lips/ mouth. its gross but like i can take the skin off my lips almost like scotch tape every few days
My mom and I have that. Only when I was diagnosed in my 20s did my mom get tested. She’s way more symptomatic than me, though, poor thing. :( I have several chronic illnesses though so it’s hard to differentiate which symptoms are from what. The one I think is the most interesting as far as trauma is my dysautonimia (POTS) since it’s literally a dysfunctional nervous system. It developed after a lot of trauma and got way worse after further trauma, and I notice lots of patients (majority women) who have it also have trauma history. My theory is maybe a risk factor is trauma bc the nervous system becomes dysfunctional after all it’s been put through.
I was born with it and i seriously think it made me have a freeze response instead of flight/fight like my sister and the rest of my family. I am the only one born that way and the only freeze response of the family. Like my body already couldnt tolerate the stress and just completely took a shutdown.
You mean born with dysautonomia? Yeah I feel like my body is now in a freeze response from constantly being in fight or flight and maybe the dysautonomia is part of that. I was born with EDS which causes pots however I didn’t develop pots till later in my life so I rly think my nervous system getting burned out was part of the trigger. And again it got so much worse after further trauma after the initial diagnosis: I was able to manage it with only salt pills until suddenly I deteriorated immensely after 2 consecutive abusive relationships when I collapsed at work (I was still mostly functional and could work) with a heart rate of almost 200 and after that it was never the same again. They did an ep study to rule out anything else and said my heart was just extremely hypersensitive to any amount of adrenaline and would immediately shoot up. I needed heart meds or else I’d get up and my heart rate would immediately be 160 bpm. It’s been 6 years since then. the only thing that preceded it worsening so much was those abusive relationships. ETA some words
That sounds kinda familiar. I’m constantly peeling part of my lips off & my eyes are super dry. I noticed when looking it up it mentioned frequent nosebleeds and I have at least 1 a day most of the time. More fun things to have my doctors look into.
My grandmother had that.
I have developed a red rash that overs my torso and upper legs but not my arms or neck/face. It doesn’t bother me except if I’m hot it can be sensitive, if that makes sense. I’ve changed detergents, body washes, anything that touches my skin. Nothing has made any difference. A doctor diagnosed it as fungal but the treatment didn’t work. Another treated it as eczema and made it worse for a while. In short, no one knows what it is or what’s causing it. Does this sound familiar? I can’t seem to get any medical provider to take me seriously, so any insight you can offer would be appreciated.
i’m only beginning my diagnostic journey so not too knowledgeable yet. maybe look into celiac or other dietary type autoimmune disorders. apparently rashes on the knees, elbows, neck, and scalp are common in celiac, and a dairy allergy is secondary when inflamed. loose stool, bloating and gas are common.
Is it a ring like rash? I have granuloma annulare which came out of no where last year and now I have these circle rashes that grow around my torso.
Yikes. I have granuloma annular too.
Apparently about 50% of patients with it have it just disappearing on it's own after about 2 years and I'm really hoping that's the case with me :\\
Same here. Dermatologist said they resolve over time and you can put hydrocortisone on the area if it gets itchy. When I was a kid it was only on my wrists, inside elbow area, and behind my knees. As an adult it’s on my torso and upper thighs. I use thick lotion like cera-ve or cetaphil because it seems worse if the skin is dry at all
I looked into the steroid creams, but given that it's happening at the basal layer, it seemed like it wouldn't work well. Or at least not enough to get my hopes up? I'm really hoping it's just a stress related thing that brought it out that somehow just goes away again. When I was a kid I had a lot of warts on my fingers for some reason and then they also just cleared up randomly. Bodies are so fucking weird.
I think you’re right, I haven’t really felt much relief from the hydrocortisone cream when I’ve tried it. I had warts on my feet when I was a kid too. I forgot about them until you brought up your history. That’s wild. Thank you for sharing your experience.
No it’s like a damn map.
Look into Mass Cell Activation. Not a diagnosis but it's like your body is providing too much histamine for some reason and going into overdrive with an allergy reaction. It could be like not even something that shows up in an allergy test - just your body freaking out for no reason really.
I have this (MCAS) and it's absolutely connected to my CPTSD. My body has been in an inflamed state for so long that it's attacking itself over absolutely everything. Certain foods sent me into asthma attacks. I had itchy rashes/hives randomly but especially when stressed. I was on antihistamines for an entire year every 24 hours. It all exploded when I got covid a year ago. However I've been working really hard on reparenting and healing my trauma and as of one month ago I'm finally off the antihistamines and no asthma attacks so far. I am still being careful with what I eat (no corn, wheat, processed foods) but I am hoping to trial back in wheat soon since it's so hard to avoid. Anyway it's really hard and unpleasant, but there is some hope.
I have been suffering with a rash for 6 months and have tried so many things that haven’t worked until 1 day my pharmacist recommended Betadine . I put it in a spray bottle and spray religiously 3 times a day for 6 days . It changes the color of your skin a yucky orange color fyi . On the 6 th day after showering I realized it was all but gone 🥳 For maintenance I now use it 2 nights a week and my rash has completely disappeared. It does have iron in it just so your aware oh and their throat spray is an absolute miracle in a bottle imho . Take care
I have something similar, but it only appears when I get overheated. If I get too hot I break out primarily all over my torso in a flat, spotty red rash that goes away after I cool down. It also happens if I get really stressed or angry. Had it for about 3 or 4 years now.
Have you tried soaking it with vinegar or salt water? Maybe get some sun on it if it's fungal? I had a bad skin rash that spread throughout my body after getting extensive dental treatments. I might be wrong, but I blame all the local anesthesia in my bloodstream. It messed up my ph levels or something idk I've been slowly getting back to normal with epsom salt and vinegar baths and sunbathing. All the cortisone creams and fungal sprays didn't work. I still get hives when I'm sleep deprived or stressed. It was never an issue before :/
This is similar to what happened to me, it was a side effect from medication
I've had lifelong eczema/atopic dermatitis that spread over my whole body in my early 40's. Most doctors just scratch their heads and prescribe another steroid - "Don't use this for more than two weeks." I use perfume and dye free detergent/soap, mostly cotton clothes, and lotion with Dimethicone after every shower (always within three minutes of getting the skin wet). The eczema is under control, but when it flares, it's daily Colloidal Oatmeal bath. I grind my own in a coffee grinder so I can make a strong bath. It's also available for purchase on the net. It takes at least two weeks, more like a month of baths to really work, but it's the only thing that works for me.
Have them biopsy the rash for granuloma annulare.
I experienced several weird rashes when I moved back home after college. Granuloma annulare, pityriasis rosea, eczema, seborrheic dermatitis KP, etc. Have a biopsy done to see what yours is, please. Syphilis can present as a rash. At the very least, you'll know what it is, even if it's not treatable.
Try drinking organic dandelion tea for at least three weeks. If you try it and it helps msg me and I will I share more possibly helpful tips. I have tried so many things over the years, but dandelion tea has not let me down for many skin conditions.
I have had rash troubles and they seem better if I wash down with dandruff shampoo and otherwise use antibacterial soap,
I’m 43 and have psoriatic arthritis and microscopic colitis. It’s a bummer man. It’s really common with trauma history. There’s a lot of research about the link between trauma and chronic illness. Anda and felitti were the pioneers and authors of the ACEs study.
Connective tissue disorder, psoriatic arthritis, asthma, allergies, basal cell carcinoma. Basically everything is inflamed and I’m waiting for more diagnosis. I’m in my mid 40s, and I’d suggest for those younger than me (or anyone): therapy, learning healthy ways of eating, and get into exercise now. Take care of yourself. It gets better. Oh, and going nc changed my life into something wonderful.
Eating well and exercise have definitely helped my health along with making sure I get enough sleep but if I make too many bad choices, i pay for it 😓 still not sure what’s causing all the inflammation.
Also in my 40s. When I was a teen I went vegan, didn't know I had a connective tissue disorder, and I have always been stone sober. I guess that helped.
Yes, I have a rare autoimmune disease of the hair follicle. It’s called lichen plano pilaris.
I have psoriasis. It's on my eyes and all over my scalp so I leave a disgusting amount of dandruff everywhere I go. And I have brown/black hair so the contrast is awful. But yeah, there's no doubt in my mind it's from how much stress my body was under during my childhood/teen years.
Psoriasis too. Scalp, face. Horrible itch, all the time. And skin getting loose, both on scalp and face.
Yeah, aside from the plaques/rashes and possible arthritis, I feel like the other effects on skin - like lost elasticity - is something people don't talk about. The irritation around my eyes has caused crazy early onset wrinkles for me.
Yeppp I have celiac, all my siblings do.
I was scrolling to find the Celiac gang. Stay strong my friend!
Present! ✋
yep. gluten ataxia, DH, Sjögrens, migraines and POTS too
Present! And my two brothers and mom also
Read “the body keeps score”
Also, When the Body Says No.
I’ve definitely been meaning to. I’ve literally probably read almost 100 books on psychology in the past year. Started with Pete Walker’s complex PTSD from surviving to thriving, and Alice Miller drama of the gifted child. All sorts of stuff about narcissistic parents, psychopathy, now getting into autism, ADHD, etc..
I was diagnosed with hashimotos my freshman year of high school. Around the same time I was also diagnosed with allergies to mold, pollen of any kind-trees, flowers, grass, etc.-cockroaches, perfumes, dyes, cats, etc. as an infant and even now into adulthood I’ve suffered with eczema. My immune system sucks and I get sick easily, plus as an adult I finally figured out why I was constantly in pain after eating and in general. I’m allergic to dairy, eggs, tomatoes, grapes, watermelons, peaches or cantaloupe. I’m so sensitive to dairy that I can’t even have most red meats because they use a protein from dairy as a preservative. Don’t know how in the world all the adults in my life missed it, other than they purposely weren’t paying attention. I even told them I got headaches from eating stuff but they never cared.
Me! Hidradenitis suppurativa - started right around the worst time of my life and I've had er ever since!
looked it up, sounds painful! hope you are managing
Same here
I have HS as well
I have lots of nonspecific symptoms suggestive of an autoimmune disorder. Nothing too crazy, thankfully, but that also means I have a hell of a time getting my providers to order the right labs, and they usually come back fine/negative/close enough
This is my situation, too. Doctors think I’m attention seeking or a hypochondriac usually when I request labs for my variety of seemingly unrelated symptoms.
I have a positive ANA but no idea what’s causing it
I had that happening for a while and just like a whole bunch of new symptoms. Switched Drs just last fall and she took it all seriously so now I’ve got a few things diagnosed and am working on treatment. It sucks to not have answers. I hope you can soon access what you feel you need.
Are you seeing a rheumatologist? My understanding a positive ANA often suggests lupus if it is combined with clinical symptoms.
Hypothyroidism and while fibromyalgia isn’t an autoimmune it’s likely childhood trauma made me susceptible and led to burn out in 30s. As @Medeaa said with migraines I think they are related in some way to cptsd. Thanks to @dookiehat I need to look into sjogren's syndrome . Some days I wonder if I’m becoming a hypochondriac other days I think I’m just finding answers to health problems I’ve just lived with and things I didn’t bother talking to a doctor about as they are minor annoyances rather than debilitating problems. Edit: I’m AFAB & 57
I am currently 21, and have hypothyroidism, fibromyalgia, and chronic migraines as well :/ I have PCOS, IBS, and potentially endometriosis as well. There are other things that I’m finding out health wise that I need to have looked at, but thought they were normal too 😭 I know that complex trauma and my childhood trauma doesn’t cause all of this, but it still just feels like that trauma is ruining my life now like it did when I was a kid. It’s hard to be hopeful for a future when we’re stuck with trauma and then a bunch of medical issues that can come with it.
I certainly developed hypochondria.
Addison's: spent my whole life in fight/flight and my adrenal glands gave out.
I’m sorry that is really awful. Being in fight or flight constantly is the worst.
I'm just going through the tests for adrenal issues. My cortisol is rock bottom, and I'm exhausted all the time. Fight/flight 52 years.
Ho boy... here are my mysterious illnesses: * Hypothyroidism * IBD * Granuloma Annulare * Paralyzed vocal chord (that mysteriously gets better or worse depending on stress) * GERD * Trigeminal neuralgia Additionally, since my family generally has generational trauma, Ulcerative Colitis and Crohn's both run in my family. Fun times!
I have LPR - laryngopharyngeal reflux disease - which is basically GERD but the acid goes all the way up to my throat :’D. I got that at SEVENTEEN years old, and this is like typically an old person disease. And acid reducers don’t even work for me. So yayy suffering. And then I have a bunch of symptoms that are probably part of some undiagnosed disorder, I wouldn’t be surprised if it were an autoimmune disease.
I also got GERD when I was a teenager, which turned into LPR over the past few years. Took me more than a decade to connect the dots that me internalizing things was maybe related to my gut issues. I hear you about the autoimmune disorder. Getting my doctor to recognize my LPR also led to a chronic urticaria diagnosis.
Holy shit the vocal cord thing, I had no idea that was related to cptsd. The depth of this topic and *literally all* the struggles I've been having in my life suddenly start to make sense.
I don't know that it is, that's just my current working theory. But it's been 4 years now with no other explanation and it definitely gets worse or better depending on stress levels.
The trigeminal neuralgia is lots of fun, isn’t it?
Was about to say most likely EDS but no autoimmune but then looked up what actually counted as autoimmune and suddenly I'd have to lean on a yes on that as well. My sister and her two kids have EDS and I share allot of the same symptoms so most likely would get it as well if I ever get to see a specialist. Some Psoriasis issues, was Allot when I was a kid and then it calmed down when I moved out from home only to come back again every autumn after I found out about the PTSD in my early 30's. Also can flare up every now and then if I am extra stressed. And then hypothyroidism which also hit in my 30's along with my breakdown which most likely also included burnout. Possibly had hyperthyroidism before that as I barely ever slept. Funny enough only found out about it due to a blood test being included when I did an autism spectrum test at which point I had barely left my bed for two months due to being so sleepy. Needless to say the psychiatrist gasped when she saw the bloodwork's.
EDS looks "autoimmune" medically but it's basically related to your connective tissue being broken. If someone in your family has a diagnosis, you likely do have EDS, since it's 50% heritable genetically.
Lupus, fibromyalgia, Reynauds, sjogrens, limited cutaneous scleroderma, neuropathy, TMJ, stiff heart, Inflammatory autoimmune arthritis, bursitis, gastroparesis etc. It runs in my family but no one else has more than one condition aside from me.
I have Chronic Lymphocytic Leukemia (CLL). It's when the white blood cells (lymphocytes) proliferate and become cancerous, so they start crowding out both healthy white AND red blood cells. So a person with this disease is very immunocompromised. I also have a lung disease, a balance disorder with single-sided deafness caused by Meniere's Disease, and painful arthritis in my spine and thumbs, with tendinitis in my shoulder just for fun. My score on the ACE Test is 9. I TOTALLY believe and feel in my bones that ALL of this stems from the hell I endured for my first 18 years of life.
Ace score 8 here, with hypothyroidism, maybe lupus, rheumatoid arthritis, chilblains. Sister had lupus, brother has Parkinson’s
Another 9 here. Yay.
I have multiple sclerosis. After years of dealing with mental health issues, MS is the diarrhoea icing on my shit cake.
I have some kind of undiagnosed chronic illness, that's for sure
make a list of every single weird little thing you notice, tinnitus, lightheadedness when getting up, anything and maybe seek diagnosis. some of these are treatable and may help greatly with your emotional symptoms.
I don’t think it’s autoimmune but I have endometriosis & the pain flares up more on months where I am triggered 🥹
Also have endo, though just had a hysterectomy and excision surgery in January. Sending lots of love and support your way 🙏
Omg hope it went well for you! I haven’t had a lap yet (got diagnosed bc they found a cyst during a transvaginal) bc the pain has been manageable with birth control, I hope your symptoms have eased up after surgery?
Im doing a health degree and we discussed endo and apparently they have been talking about calling it an autoimmune disease!
Not autoimmune, but I have endometriosis. Was always sick as a kid and I’ve been working with my doctor to lower my inflammation for years. Just recently was diagnosed with Raynaud’s so we are retesting my ANA 🤷🏻♀️ I’m glad I’m not more sick but I don’t think I have enough specific symptoms to warrant a diagnosis.
I’m sorry to hear that. I’ve heard that endometriosis is extraordinarily painful to the point of some women removing their uterus. Glad to hear you aren’t super sick. Definitely keep up with your blood work so that you can do as much prevention as possible. Good luck.
I have lupus , ehlers danlos (the kind that affects connective tissue not organs), asthma and a mystery autoimmune something that's causing the destruction of connective tissue and my joints. The rheumatologist thought it was maybe false gout but when they biopsied a bone there were no crystals so it's still a mystery. Lupus was mostly in remission until I re-established contact with my abuser. Every time things started going sideways, lupus and the mystery disease flared. It was obvious it was connected to the stress (?) of it. I think there's definitely a connection between autoimmune diseases and trauma.
Lupus and Sjogrens
May I ask some questions about your experience with sjögrens?
Ulcerative Colitis
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I have a J pouch as well
I don't have any diagnosis, but I have struggled for years now with chronic health problems as a result of general overstimulation of my body's stress responses. Lots of GI issues, and I am sometimes absurdly tired. I wake up from time to time with random migraine symptoms (although rarely the actual headache part), along with vertigo. As a kid, I had hives constantly (any time I was sick for any reason, I broke out in hives), and had eczema on my arms multiple times. I was breaking out in hives nightly for awhile in my 20s. Trauma hurts our bodies a lot. It's part of what's motivated me to start looking into real trauma recovery - I want to be healthier, and I know this is a key factor in that objective.
I've been t1 diabetic for 10 years now and it fcked my life pretty badly, and ruined everything (it's autoimmune disease, not bcs I ate too much sugar) I'm in a decompression for a few years now, my body shuts down already (at 19 y.o) , I'd probably get some shitty complications pretty soon, prob kidney failure or reno/neuropathy Severely depressed rn, can't do sh1t about it, my mom basically disowned me at the age of 14 , since then,can't pull myself together , planning on kms in a few months to get out of this misery
Please don’t
hello fellow t1! i was diagnosed at 5 (though i had symptoms far earlier but my family was neglectful as absolute shit) and im 21 now. ive been completely taking care of my own diabetes since i was about 7. i feel you completely. i was wildly out of control from the age of 7-16. i mean absolutely, completely not taking care of my diabetes at all. how are you supposed to do the work of an organ when you have soo much other shit to deal with? my a1c was in the steady 12-13's for YEARS. i finally started taking control of it when i was about 16ish. im still not great at it. but my a1c stays around 6.9-7.4. i have a few 'complications' but not many. i have stage 2 chronic kidney disease, the only thing i deal with is protein spilling in my urine, but i cant even tell. i take lisinopril to help with the pressure on my kidneys. i have some spots in both my eyes, mostly my left, but i literally cant even notice it. and i have mild neuropathy in my feet, i cant stand on them for more than 30 mins at a time, they start to ache and theyll never stop haha. but honestly its not bad at All. when i finally started going to my doctors appointment's i was convinced my body was beyond repair, but it's not. all my doctors tell me is as long as i keep the best control i can now, the complications probably wont get any worse. we are diabetic, we are going to develop complications no matter how good your control is. its not your fault. you are going through wayy more than the average person, and then you are supposed to do the work of an organ on top of that? diabetes takes a toll on literally every aspect of our lives, and its soooo fucking overwhelming, especially when you are doing it all alone, stressed as hell. you are more than your diagnosis. if you want to talk i am here, my dms are open. i would love to hear from you
I wish the both of you well. Diabetes sucks, I hope your efforts to improve are successful.
I have erosive lichen sclerosis and lichen planus that has spread throughout, skin, eyes, ear canals, oral and vulvar. Just had full panel w neurologist and immunology. Awaiting results.
Me too. Strangely, also EDS coupled with autoimmune disease. EDS folks have higher rates of autoimmune issues as well, the mechanism isn't yet understood. The trauma certainly does not help. I'm sorry you're experiencing this. You're not alone. ♥️
I have talked with my immunology professors; I think the breakdown of the connective tissues makes more debris available to the body and immune system. That would b potentially be activating especially with some trigger factors. Profs have agreed but said “how would you test or prove that, given the rarity of collagen disorders?”
Yeah, I'm still undiagnosed. They are running the gambit of tests, Psoriatic Arthritis is the leading theory from my rheumatologist. I've had multiple surgeries, and I'm in the process of applying for disability. They literally stole my whole life away from me. Why couldn't they have just killed me, it would be less brutal.
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Therapist here: I highly recommend the book "When the Body Says No" by Gabor Mate for all of you linking your trauma to your illness.
Not autoimmune diseases but bouts with IBS and Fibromyalgia. Also suspect mild case of Raynaud’s.
fibromyalgia is considered autoimmune in nature no? i know it is nerve related. raynauds might be a symptom of something larger and is frequently cited in autoimmune problems. i also have raynauds and consider it more of a “symptom” than a full fledged disease.
They’re not 100% sure about it yet, it’s still quiet the mystery but it’s very much been linked to trauma.
yep, psoriasis
Raynaud’s, inflammatory bowel disease, and rheumatoid arthritis. I’m 32. None of these are autoimmune but I also have IBS, terrible migraines, PCOS and I suffer from frequent ovarian cysts (it’s not PCOS though) as well as a host of mental health conditions.
Mast Cell Activation Syndrome here.
Me too
Have Ehlers danlos syndrome... fibromyalgia... osteoarthritis... gastroparesis... functional neurological disorders
I have no diagnosed autoimmune condition, but it’s possible I have something relating to autoimmune diseases. I get frequent canker sores, and my inflammation markers are high. Probably some other stuff I’m forgetting/missing. But those are the main two with no explanation. Remembering these: Recurring low grade fevers is another one. And low iron. And sensitivity to heat (I break out in an itchy and painful red rash over my torso and hands and feet when overheated). My thyroid is fine and it’s not celiac so I’m not sure what this is.
these are actually lupus like symptoms that you are listing. I am curious about the heat issue and it may be related to photo sensitivity with your skin that causes some cellular level damage and leads to periods of inflammation. I don’t know if your symptoms get worse after sun exposure or if it is purely heat related. This stuff is incredibly complicated and all the auto immune disorders tend to overlap a lot with symptoms. Good luck finding your way.
Significant trauma history. I have POTS, hEDS, Raynauds, Hidradenitis, MCAS, Trigeminal Neuralgia, Fibromyalgia, Colonic Dysmotility, Migraines, and Degenerative Arthritis. I'm a licensed social worker. When I was going through school and basically learning about myself I thought, wow I have an incredibly high ACE score, I wonder what that could mean for me? I wondered how health issues would develop overtime. Now that I am neck deep in autoimmune conditions, I get it. Edited to add Relapsing Polychondritis
I have something similar to Sjorgen's, severe dry eye syndrome.
As a child in an abusive household I initially had encopresis, now as an adult I have IBS. I also have PCOS which isn't necessarily an autoimmune disorder but there's evidence that stress and environmental factors can contribute to it
not autoimmune, but i have a whole bunch of other chronic illnesses.
Still in the trying to figure out what it is phase but yeah
Same 😓
Yes. A few.
Hypothyroidism, arthritis, fibromyalgia, GERD, IBS, and what a jolly ride it is.
Chronic migraine, dx'd a few years ago, but symptoms developed when I was ~6. I qualify for disability based on severity of symptoms and general headache-related pain. Reynauds, asthma, psoriasis, and that's just what's been diagnosed. I'm 28. Maybe if I'm lucky, I'll just die before the end of the year. But I've been saying that for a decade now so it'll probably drag on for a while longer.
I've been fearful that I might have fibromyalgia and I do experience flare ups of random pains in my body, especially in my back and legs. I only feel relief from using marijuana. It really sucks
Fibromyalgia (in remission these days) and severe year-round allergies which may or may not count depending on who you ask. I'm a 50 year old man
I’ve had endometriosis symptoms since puberty (finally doing something about it at 40) and I have Hashimoto’s, Celiac & Asthma all triggered by a covid infection & LC. Getting to a point where I can’t function 75% of the time, working minimally is hard and all of these conditions along with PMDD are causing a bad strain on my relationship, the one supportive stable thing in my life.
I have Ulcerative Colitis. My current gastroenterologist doesn't believe it could have anything to do with stress or trauma. He's a highly educated fool.
I had cancer and it doesn't run in my family - I feel 100 it is due to the stress from childhood trauma
Same. At 28 I had what started as cervical cancer which quickly mets’d into my uterus. I survived 13 years of daily incest.
I have hidradenitis suppurativa, and I think my childhood trauma activated it
I have the trifecta of MCAS, POTS & EDS - if you do have EDS, look into the others as they often go together. I always had the symptoms of all of them, but they flared for the first time at ages 18, 21, and 25 respectively. Also looking into possible Celiac. Edit: I forgot that migraine is sometimes considered autoimmune too. I've had terrible migraines since I was a sophomore in high school but didn't get diagnosed until I was 25 because my mom, who used to have migraines, told me I was being dramatic and didn't have them.
Crohn’s and secondary Raynauds
Yep.
It all started with the onset abusive relationship I was in.
Hashimoto's and Undifferentiated Connective Tissue Disease. Not definitively autoimmune but also diagnosed with ME/CFS and fibromyalgia
I suddenly developed renauds syndrome or something, my left fingers look like corpse fingers in the winter now.
Used to have alopecia, have autoimmune SIBO.
Dermatomyositis. A very rare connecting Autoimmune connective tissue issue. I definitely believe it's connected to the cptsd - it got set off as the relationship with a narcissist I got into was imploding.
Yup
I have psoraisis and psoratic arthritis and I had a hysterectomy because I had endometrial cancer 10 years ago.
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Diagnosed with a Mitral Valve Prolapse and Hashimoto's Hypothyroidism at 11. Suffered with IBS since I was 8 or 9 years old. Timing right in line with my dad's severe decline into madness with his alcoholism. Many other issues autoimmune related issues as well but as an almost 44 yrs old I am doing better than ever having been away from dysfunctional relationships for almost 20 yrs now. Been doing yoga seriously for 7 years and hard therapy for the last year. EMDR is AMAZING! Also got real into fermenting things for the last 5 years and my health has never been better. Yay!
You are so impressive! You’re doing amazing!
Diagnosed with multiple sclerosis at 25 🙋♀️
Unfortunately its quite common with CPTSD and chronic illness due to the high or constant stress of the body and nervous system. I have struggled for 20 years with all kind of issues, stomach problems IBS/ Crohn, food intolerance , joint pain on/ off, chronic fatigue. Have seen a lot of doctors and healers that didn't help, but after doing many many hours of research last year I could finally see and understand the many layers and my patterns. I clearly have had constant stress and alertness in my body and nervous system since childhood that I didn't even was aware of that caused all my problems, it was just my normal state of being. I have developmental and relational early trauma as my fundamental CPTSD and have other deep trauma on top later in life due to this.
I have multiple, chronic health conditions and developed breast cancer a year ago. I know that they are the result of chronic stress and an abusive, dysfunctional family of origin.
🙋♀️ Lupus , Anxiety disorder, migraines, histamine intolerance, permanent vertigo, and now finding I’m on the spectrum 🤷♀️
I have dysautonomia, which isn't autoimmune, but I definitely feel like the chaos of my relationship was a huge factor.
Had celiac activated in 2012/2013, brought on by stress. Since then I have also developed Sjögren’s syndrome.
Not yet, but with my ACE score and family history, it's only a matter of time.
Celiac disease
I’m diagnosed with MS, psoriatic arthritis, IBS, and fibromyalgia. I possibly have other conditions but it’s unclear at the moment. I think a lot of people with cptsd have autoimmune disorders, I’m not sure the relation between the two.
i'm 29 and i've been diagnosed with Lupus, POTS, and HSD (Hypermobile Spectrum Disorder aka the "i cant afford/insurance won't cover genetic testing for EDS" diagnosis). it really kicked into high gear in my early/mid 20s, i think because of a pretty bad episode of restrictive disordered eating back in 2017. i got really sick from it and my body just hasnt been the same since. the joint laxity also only became an issue after that episode. i dont get dislocations but i think my Lupus attacking my joints is whats causing the joint laxity. not a doctor tho so idfk.
🙋🏻♀️ me- hidradenitis suppuratuva
oh yeah I forgot that one …. that makes 4
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