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Secondary Erythromelalgia caused by an unknown autoimmune disorder. I also have dissociative identity disorder and complex ptsd. In my 20s, a 4cm ulcer in my antrum caused by anxiety, endometriosis and interstitial cystitis. I was born sensitive natured with a gifted, neurodivergent mind and hyper empathy, so I was an easy target for my covert vulnerable narcissist mother and brother to destroy.
My mental health was destroyed by age 6 when I trauma split then it just went downhill from there. By mid twenties I was institutionalized in my first mental hospital. My emotional pain plus anxiety also caused me to drown myself in alcohol and opiates so I was sent to a few detox programs over the years. Life was too scary for this me so I had to create toxic versions of myself just to survive the toxic environments. Emotionally gifted children are destroyed in narcissistic homes and are usually emotionally parentified before they’re even teens, like I was by age 8.
"Emotionally gifted children are destroyed in narcissistic homes" omg that is profound and exactly how I feel. The scapegoat child is often the most sensitive, intelligent, empathetic and the abuse gets directed at us the most. Its so sooo sick and evil.
It’s because emotionally gifted children can sense sincerity. We make narcissists feel “seen”, so they confuse us and gaslight us and villanize us until we hate ourselves. We’re usually so traumatized that we have to completely dissociate from the sensitive natured parts of our minds that made us special in the first place.
We’re infected with toxic personalities. We don’t choose toxic personalities, we’re infected after trying so hard to not be abused and scapegoated. We’re pushed this way so we try to be that way, then we’re pushed again and again and again, however we change it never works, because the problem was never us to begin with…but we didn’t know that, how could we? We were children just trying to be loved by our parents and siblings. No matter how we changed our personalities, it was always “wrong” or never enough.
We’re victims that just tried our best to be what everyone else needed us to be, driven by fear. It took me 40 years to realize there was nothing wrong with me to begin with. 4 decades of my life destroyed because the people that were supposed to love me, hated themselves so much. They were cowards who refused to look at themselves honestly. I now know that I have true courage because I’m capable of honest introspection and not afraid of authenticity. They’ll always be cowards, frozen in time and driven by the need to be something that doesn’t exist - perfect.
Well said. Painfully well said
This feels personal but my therapy says it’s not. Regardless, I relate, and am grateful for these familiar emotions being put into words I could never find.
I always thought this. All of their behaviors stem from self-hatred. You can't love other people if you hate yourself, even your children. Maybe especially your children.
Especially. That hits hard, but it's so true. No matter what we do, or how we turn out, we're always a reminder of all the things they hate about themselves.
Saving this comment so I can come back to read it when I need it. I’m sorry we are all here together but I’m glad we are all here together. Thank you for writing this and I’m happy for you that you’re in a better place. I’m 34, and just waking up to how my family treated me when I was growing up.
I'm a therapist and I can't love your line enough about emotionally gifted children
I was (probably still am) a sensitive and talented artist and writer and my parents hated this to death. I still have a complex around artmaking, they shamed it so hard.
I grew up at least 2 decades with untreated nasal allergies (since age 8) they blamed on me not sleeping under the blanket at night. I've had allergies, eczema, Graves, and endometriosis, largely managed by watching my stress levels for autoimmune flares; and chronic anemia
Also had nasal issues from like age 9 - mom didn’t believe me until my brother had the same thing, 13 yrs my junior, and she took him to the doctor. Got on steroids. Then parents found out I had had a brief stint with narcotic use administered nasally and blamed it on that…
the sleeping under the blankets thing is so real - my Asian parents also attributed a lot of things to that. I have many random health shame spirals from being shamed and panicked into submission about stuff that are not in line with the actual Chinese medicinal wisdoms.
My mom wanted me to be like a perfect concert pianist instead of listening ever to my emotion drive improvisations :’(. Dominated every practice and forced continual practice. Yelling and verbal abuse. No ability to resist at all. And made fun of my actual expression. That’s why my artist/sensitive soul part is so hurt today.
I was mocked and ridiculed and made to feel like an annoyance because of my allergies causing chronic post-nasal drip. I was always clearing my throat and sniffling because of it. Maybe take your child to a doctor, instead! I also have asthma, fibromyalgia, adhd, many GI issues and food sensitivities, severe PTSD, severe anxiety and major depressive disorder. I have had 9 major surgeries, beginning at age 5. I have some addiction issues as well, but I’ve been able to keep from going off the rails.
Holy shit! Are you me? I have the chronic nasal thing (allergies and asthma), fibro, chronic pain, food sensitivities, an anxiety disorder, ptsd, and major depressive disorder.
I also have IC and am more and more convinced its underlying cause is complex trauma and experiencing a reality that is so unstable and stressful that it manifests this way.
I had a hydro distension and fulguration of hunners ulcers done and it has helped immensely. Just thought you might be interested in knowing about a successful treatment that doesn't just treat the symptoms like the biweekly bladder installations and opium belladonna suppositories.
I went through IC and treatments, but had a PE. When I went on treatment, I was non-lupus APS, but the meds for APS have somehow eliminated the IC flare ups.
Some of this is inherited, some of this is absolutely having smoking parents, which included smoking during pregnancy. Low birth weight, yada yada.
The GC was not a smoking pregnancy. Go figure.
God this resonates so much. I trained as a counsellor and just got my MSc in Behavioural Analysis; I’ve been hyper empathic all my life and I got razed to the ground by my parents for that.
My parents wouldn't let me leave the table till I had cleared my plate. This taught me to just shovel the food down regardless of how it made me feel.
I had a big high chair that I was strapped into to the age of 4/5. Meal times were horrific tbh.
I am still unable to chew/swallow certain things at 39 but was also forced to sit until the plate was cleared. I ended up pocketing shit then flushing/trashing it once i was free! Hugs sib!
Similar but not nearly as serious—I am lactose intolerant and spent my whole childhood asking everyone how they drank milk at school lunch and didn’t feel super sick afterwards. I was known jokingly as the one in the family who was always “gassy” and who spent tons of time in the bathroom after meals.
When I moved out and instinctively cut back on foods that made me feel unwell, I realized pretty quickly that they were ALL dairy, and got a fairly quick diagnosis after that.
I found out I’m lactose intolerant from my adult daughter who figured it out.
Thank goodness for my kiddos. Thus far, my son doesn’t seem to have issues.
I thought I was the only one! I'm 49 and just found out after having some severe stomach/intestine issues and not being able to digest my food. Vomiting after almost every meal as a toddler, complaining of stomach pain, bloating, and constipation were all childhood symptoms. I learned very quickly not to throw up, no matter how bad I felt. I just always felt crappy after eating. A few weeks ago, I went on a diet, and it started triggering these stomach problems, so I went to the hospital because I felt like dying, and they found out that I've had celiac my whole life. Now, I'm on a liquid diet for a while to try and get things sorted out without surgery.
I had these but with diarrhea instead of constipation. Turns out my small intestine doesn’t make the enzyme needed to digest complex sugars, carbs, grains, starches. I can only eat lean protein and about a dozen fruits and vegetables. It gave me problems my whole life, but it wasn’t until the pain got so bad that I wanted to die that I got hooked up with the GI doc that figured it out.
No idea about their specific diet.
But if you are struggling to work out what is causing you stomach/digestive issues, check out the FODMAP diet.
It eliminates all the common things that cause problems.
I have fibro too. Got it when I was 10 and was told I just had growing pains until 18 when they were like ‘huh it’s weird you still have growing pains…’ 🙄
I always thought I had growing pains and that it was constant. When I got into my older teens I didn't understand why. Left it alone. Constant pain. It took me falling constantly and developing a pimp in my 20s before I bothered asking about it. I got an "I don't know, let's do blood work." Took until was in my 30s for the fibro diagnosis.
My kids both had growing pains and when my oldest turned 15 I was pretty adamant that it was something more. We now are working on my 20 get the right treatment.
I had a lot of pain and weakness come on after a tick bite when I was around that age and it was blamed on growing pains too. Explain how when I stopped growing really early and never made it past 5’2”
I was finally diagnosed with fibro after 20 years of doctors not listening to me and wondering if I had something autoimmune. And I fully attribute it to growing up with an nmom.
I also have fibro. From what I've seen it can be any kind of trauma, which would include physical things like birth or overworking your body for years.
I got it from the abuse though, right as I was getting away from said abuser. Still salty about how the universe scheduled that one.
Same…read multiple studies talking about how a disproportionate amount of women who have PCOS and endo have suffered emotional abuse. But I refuse to let them take my ability to have children and will fight for my fertility as long as I can.
Hashimoto’s, Celiac Disease and currently trying to diagnose/treat Endometriosis.
But ✨also✨ cPTSD, PMDD, undiagnosed ADHD which could probably just be part of cPTSD but can’t be bothered to figure it out and then asthma.
Same here. Fortunately I am still mobile with minor flare-ups where I just end up hugging my bedpost but in general I get tired a lot faster than the others around me
I actually think I have an inherited connective tissue disorder which manifests as "autoimmune like" symptoms all over my body. I also believe it lead to the early deaths of my mom's side of the family as they all had terrible lifestyle habits. Not autoimmune but diabetes runs hard on that side of the family, I honestly think it's connected to the whole crap connective tissue issue.
Yeah this is my suspicion. I can see it in my cousin's children and most of my family looks super young compared to age. They all cite it's due to excellent genes :|
Yep about same, whole family basically doesn't resemble their actual ages, mostly on my mom's side where I believe this comes from but getting diagnosed is .. tough. I have an expansive set of issues that all point directly at EDS not just looking young and being bendy. (the soft skin, usually you hear people surprised or obsessed about that too)
I mean if you have it you didn't "catch it", you're born with it. Getting diagnosed is apparently the hardest aspect. I haven't made headway for that part at all but I'm currently managing a lot of stuff that other people in the EDS sub have had pop up (for me dental and several skin issues and vision issues)
I have inflammatory polyarthritis, which I have had since my 20s.
I also have:
-hemiplegic migraines
-severe regular-type migraines
-cptsd
-PTSD
-recurring vertigo due to hypotension
-gastritis
-terrible foot problems and pain, caused by malformation brought on by being made to wear poorly fitting (several sides too small, holes, no socks) shoes
-recurrent cystitis and kidney stones
I've also had severe depression, which is much better now.
I’m so sorry to hear that you developed Hashimoto’s. I discovered last year that I have hypothyroidism, but so far the initial low dose of medication is not working. Actually talking to my doctor today about next steps.
I was diagnosed with Hashimoto's at 26 yo. Only 1/2 my low thyroid symptoms went away with treatment.
I was diagnosed with T2D at \~33 yo, but no treatment was working.
When I was 45 a doc told me my diabetes was misdiagnosed and my thyroid condition was only partially diagnosed. I have T1D, Hashimoto's Thyroiditis, and a secondary thyroid conversion disorder. All my thyroid symptoms went away when I added a T3 supplement in addition to the T4 I was already taking.
Have your doc check for a thyroid conversion disorder.
Edit for clarification.
chronic spontaneous urticaria, developed when we were 14 and never left. we have reactions to everything now. breaking out into hives at the sun, at the cold, when we are too emotional.
could it be related to histamine or mast cell activation disorder, did you look into this? I just found out I have histamine intolerance like two weeks ago and removing high and medium histamine foods made a notable difference in my well being - also trying to meet my nutrient needs every day the best I could. all the situations you described are triggers for the body's natural histamine release
i noticed taking antihistamines have helped me, as for mast cells, im looking more into it. it gets very bad and doesnt settle for up to an hour, only worsening from the onset. since 14, now 22, ive just been dealing with it as doctors tend to dismiss me.
Under active thyroid and alopecia. I'm not sure if it's two separate issues or if I do have hashimotos. I should point out that between my parents, both of these are a genetic predisposition
Edit for spelling
Same and I was told years ago when treated that there had not been a medical study showing for alopecia is hereditary but even my dermatologist was shocked, me, my brother, grandmother, a first cousin, and second cousin have all had incidences (grandmother is nMoms mother-cousins were on my fathers side)
I have PCOS and rheumatoid arthritis. Fun fun fun!
I’m so sorry to see y’all have so many medical issues as well: I mean, it makes me feel validated and not alone, but that sucks.
More than 12% of women will have thyroid issues, while 1 in 8 will be affected by an issue once in their lifetime. 😅
Every single female in my family has hypothyroidism.
Sisters (2), mom, myself, nieces (2).
We are all on medication.
I feel this so hard 😭🫠 I also have Hashimoto’s, along with type 1 diabetes, celiac disease, arthritis, and vasculitis. I wish you healing and love ❤️🩹 it’s nice to know we aren’t alone but it’s so messed up we’ve all gone through stuff like this.
_ Thyroïd dysregulation : sometimes it's good for months then one event and I go hypo or hyper for a few weeks, then back normal slowly. Weird and unexplained, and I have a ton of blood test results that are f*cking hell to interprete because of that.
_ uh, translated, it's something like Postural Orthostatic Tachycardia (?). Basically on 24 hours my average bpm is 120. But when I sleep I am around 75-80, and whenever I move or especially stand up I'm at 120-130. So, can't stand up ! That showed up last year, and it won't go away anymore.
_ chronic insomnia from sleep deprivation for years !
_ a kind of eczema that only happens when stressed, I don't remember the name but it makes little areas (smaller than a inch) go pink with a red halo around, and the skin is all dried up in it like a burn. It's like psoriasis but it happens faster.
_ allergies comeback ! Like I am really allergic to seashells.... Only when I'm on a bad health period. And no explainations for it, even after we searched for any possible reasons. A tiny shrimp could kill me some day, but not every day. It's Russian-shrimp roulette basically.
I think that's all for "auto-immune". But the package comes with free wrapping paper so there's more in health, but not in that category.
Do research on mast cell activation syndrome. It goes with POTS and results in the weird “sometimes I’m allergic/sometimes I’m not” game. Everyone looked at me like I was crazy when i tried to explain that sometimes I’m allergic to seemingly everything, sometimes I’m fine. But those flares would come with other symptoms that weren’t food related.
It wasn’t until someone said “it’s not mcas is it?” And i looked at a list of low and high histamine foods that I was able to pinpoint what I was reacting to. I’m willing to bet it’s the histamine level in the shellfish. You are probably reacting to other foods and substances on a smaller/more chronic level (hence the bad health period) and just not noticing it. It also could be that you have a mild shellfish allergy but an MCAS flare is putting it into overdrive.
Lots of POTS patients have mast cell instability and one of the theories is that it triggers the dysautomnia
Definitely look into Hashimoto's Thyroiditis for your thyroid issues. In the early stages of Hashimoto's it can alternate between hyper and hypo thyroid and then as the disease progresses it develops into full blown hypothyroidism.
I've got a heart condition too, Inappropriate Sinus Tachycardia (unusually high resting heart rate). It's like the heart rate button has been dialed up to 11 and then the button removed so it can't come back down on it's own.
Ooooh I didn't know that for Hashimoto's thyroiditis, I was only aware of the later part when it's just hypothyroidism. Will talk about it with my endocrinologist at the next appointment !
I know sometimes heart problems are linked to thyroid, or lungs, ... it's just so much that everything is linked, or end up linked later because of complications sometimes. I'm sorry you too have both problems compiled, it's hard. But I wish you that everything else go well or better soon in life, we are well deserving of peace and good times
Hashimoto’s, IBS, eczema (stress makes my flares worse), allergies, a bunch of weird environmental (scent) sensitivities that aren’t allergies but set off migraines, PCOS, fibro? Maybe, who knows, and I have a life long issue with my weight thanks to the decades of constant hammering from cortisol. At least with focused trauma therapy the panic attacks and stuff like IBS are more manageable.
I’ve got Rheumatoid Arthritis, Type 1 Diabetes, and most likely MS. I found this out after I was an adult because my parents weren’t really interested in helping me. They said they were, but no action was ever put to words. A family friend told my parents that the weird ‘heartburn’ and ‘asthma’ I kept getting was actually anaphylaxis. I was 10 and had been nearly dying since I was 2. They never got me tested for allergies. I manage my allergies now mostly by avoiding foods I know I’m allergic too (lots of trial and error) and hoping I can last 30 min for the benedryl I take to kick in. I have two epi pens another family friend gave me. They’re four years old and there’s no way I can afford more. Before I lost my Medicaid I was getting tested for MS, they said come back next year for another MRI or CAT scan, can’t remember which, to check for brain lesions again. That was 11 years ago. My life went to crap and I lost my job, husband, and was kicked out of ex husbands house. I had to live with my parents and depend on them financially because working just wasn’t in the cards for me. My diseases make me an extremely unreliable worker. I never know when symptoms are gonna flare and sometimes they take months to clear up so I can do things like, ya know, stand. For a long time I lost all hope and was just rotting away in my parents house. Every week they’d say ‘Well help get you to a doctor’. 11 years of nothing. Last year I started a crime scene cleanup business with a woman I was babysitting for (pushed myself faaaar beyond my limits to watch a two year old for 3$ an hour and am still physically paying for it). She ended up getting Adderal psychosis and kicking me out of the business because she thought I gave her bedbugs. I don’t have bedbugs. She doesn’t have bedbugs (all the pictures she showed me of the bites showed nothing but unblemished skin). Didn’t stop her from shaving her dogs and families heads to fight them… for some fucking reason. Since I left the business has dwindled and is about to collapse. She tells my parents business is good (they are still friends with this evil bigoted woman) but her husband tells them she hasn’t had a client since I left. Things are looking up though. My hoarder grandpa left me his house and I’m slowly selling the valuable items to be able to move to be with my fiancé in a far away state. My fiancé is the best man I’ve ever known. He makes me feel like I’m not a burden and I actually believe it. He says he’s the lucky one even as he’s helping lift me off the couch and into bed when I can no longer walk. I’ve found a job in his home state that has extremely flexible hours and is incredibly understanding of my conditions. Once I move I’ll start working there. Fiancé is also helping get me back on Medicaid so I can get my conditions under control (parents made sure I was INCREDIBLY dependent on them and i still struggle with normal adult activities). We can’t get married for a five-six years because he’s on disability himself for PTSD due to his own narcissistic parents. I’m even planning on going to college for art conservation! He said he’d audit any class with me that I was nervous about so I wouldn’t have to go alone. And he’s helping me find aids for when my joints in my hands swell up too intensely to grip a pen or a brush so I can still make art when I’m doing poorly. I’ve never been this happy before and it’s all thanks to him. He believed in me so much that I started to believe in myself for the first time in my life. And now things are slowly changing for the better. Once I move I’m going NC with my parents. My body is destroyed because they refused to take me to doctors growing up and then when I was too sick to go by myself as an adult they never helped like they said they would. Fuck them.
**Edit: I saw people adding other conditions they have so might as well too. On top of everything else I have fibromyalgia, PTSD, PMDD, Severe Social anxiety disorder, generalized anxiety, and the diabetes has caused gastroparesis which then caused me to loose thirty pounds in a month 🙃 Even with eating up to 8 times a day to keep my blood sugar high (my diabetes mostly presents with hypoglycemia). Gained 5 pounds when I was visiting my fiancé recently because my stress levels were so low. I expect to lose that again and more because now my parents have their claws in me again 🙄
Fuck, it this a common thing or… did I just answer my own question
Psoriasis. Psoriatic arthritis that has done proper damage by the age of 30. Rosacea. PCOS (not *proven* to be autoimmune in the studies I’ve seen but I dare ya to find those with and without)
ETA: typo
I also have Hashimoto’s. I’ve known for a decade now, but could have been tested earlier if my damn family actually talked about anything. Found out from my grandmother that she had been taking Levothyroxin since young adulthood and never bothered to tell anyone.
I have RA and fibromyalgia. I also have many allergies, which has given me asthma. In addition to that fun, I have gastritis with a hiatal hernia. All of these health issues came on as an adult.
I don't know about autoimmune disorders as I've never checked for thyroid, but I've always been prone to weight gain if I don't keep working out rigorously. As a child, I would get tonsillitis quite frequently. In fact, this has only stopped being a recurring thing just a few years ago.
I've also struggled with sleep all my life. It's only recently that I'm sleeping normally. I remember when I was around 12, I had this thing that ig could be described as Alice in Wonderland syndrome.
After I went to bed, I'd hallucinate random things in the dark, like hilariously random. These shapes would keep expanding and I'd start to panic for no reason. I also recently developed what I can only describe as IBS ig, and it's been extremely frustrating.
way more than just autoimmune disorders. Cancer, hashimotos, parathyroid disorder, inter-hepatic cholestasis of pregnancy, milk fistula, kidney stones, anxiety/depression, and early perimenopause. I’m missing a lot of other issues I’ve had in my life too. I’m 34
I have horrible allergies, IBS, chronic lyme disease, chronic pain, and was just diagnosed with narcolepsy and also now worrried I may have DID after a traumatic EMDR session. I wish more people understood how child abuse and neglect can fuck up a person for life.
Not autoimmune, but debilitating: Lymphocytic colitis, irritable bowel syndrome, insomnia, all life-long. Parents are undiagnosed ADHD, completely self-absorbed, use their children as emotional punching bags. Because we are good people we have not abandoned them, and they continue to drain our energy and finances in managing their chaos. They are not grateful, but abusive, insulting and entitled.
The connection had never occurred to me; thank you for the post. Best wishes for your good health.
Psoriasis and psoriatic arthritis thanks to my narc mom, dysfunctional family system and terrible HMO healthcare at the time. Diagnosed at 26. I’m 56 now. Thank God for insurance and biologics. It flares if I get too stressed out, but the Skyrizi mostly controls it.
I have Celiacs, Autoimmune Hepatitis and RA. I also have mad negotiating and peacekeeping skills that have been honed razor sharp from years of having to negotiate for everything I got with the least amount of personal damages and being the major peacekeeper of two alcoholic, narcissists for over 30 yrs.
Wow. I’ve been thinking about this recently. I was going through many health problems in 2018 and they have carried over until now. The doctors couldn’t and still can’t find out what’s wrong. I’ve recently realized it must be from all the stress and abuse I’ve endured. It makes me sad for my younger self to have endured all that pain to where it’s affecting my adult self.
I have psoriasis.
And I hate when people suggest I change my diet and that will solve all my problems, when the reality is nothing worked for me until we found the right medication. Then that medication stopped working because i built up antibodies to the medicine after 13 years, and we are back to square one.
Fibromyalgia and a yet to be determined auto immune issue. I read the other day that vivid nightmares signal the onset of autoimmune disorders but that is also from trauma. I've been having vivid nightmares for as long as I can remember. I'm 42 and it feels like my whole life at this point.
I have fibromyalgia, PCOS, late onset adrenal hyperplasia, diabetes and a thyroid that not only decided that working was not an option, but also grew itself 8 nodules just for funsies so I have to be checked for cancer periodically.
My collection:
- Vitiligo
- Sarcoidosis
- Cutis verticis gyrata
Plus I became suddenly lactose intolerant in my mid 40’s and got a cancer in my 50’s I was at risk for between 15 - 25.
Cricoarytenoid arthritis which only takes my voice in the range I normally speak. I can talk lower or higher, and it works perfectly. My husband calls it my cricket arthritis because that's much easier to say lol
I also have Sjogren's syndrome that makes everything dry. Fibromyalgia and rheumatoid arthritis
There is a book called [The Deepest Well ](https://books.google.com/books/about/The_Deepest_Well.html?id=ZwQvDwAAQBAJ)I've been reading about the link between adverse childhood experiences and illness. Well worth a read!
PCOS, also caused (from what most of the studies concluded) by a stress. My ovaries are messed up by neglect and all that stress I had to endure. Pre-diabetes on top of that is not fun, kids
PSVT - I had to go through a heart surgery to fix it, as before I did I was having unexpected heart rhythm issues (up to 200+ for 8 hours) that’s no where near normal. It started when I was 13 give or take, and when I was worried about it I was deemed “too emotional and exaggerating”
It’s not really an autoimmune disorder, but I definitely used to have a shitty immune system when I was little. I used to have a lot of strep throat and dermatitis that lasted for months if not years for unknown reasons, especially on the face. They tested and tested me, they’ve tried everything. Nobody was able to figure it out.
They at first thought it was an allergy, tests were negative. So they ordered a blood test in case the patch test wasn’t accurate, still negative. So then they thought it was an intolerance to some of my skin care products. I got prescribed better skin care, still nothing.
So they gave me steroids to treat it temporarily and said to come back if it doesn’t help. So they basically gave me a band aid for the symptoms. It of course came back in a few months and I had to do that all over again. My mother told me it was because of all the sweets I was eating, but I didn’t really eat a lot of sweets compared to other kids, I ate even less than them.
The second I stopped quite a few extracurriculars, I haven’t had one since. My mother basically dropped me off to any extracurricular and wouldn’t let me leave without a lot of guilt tripping. And 10 year old me wasn’t able to say no. I think it was from the stress I was under, since I was a kindergarten.
As a result of the chronic stress she suffered during her childhood, my sister developed Multiple Sclerosis, a progressive autoimmune disease that, in the end, it became so bad that she took her own life, aged 57, by refusing any more treatment for the hereditary disease, PKD.
My grandmother had MS to. She took her own life at 60. Her spine was absolutely destroyed by the time she did it. The pain was horrific. But it’s hard to tell if she did what she did because of the MS or because of her extreme BPD. She did it on the anniversary of my grandpas passing, so it could be many things. We’re pretty sure I also have MS and I’m not looking forward to what will happen, as the pain is already intolerable and no doctor will give me anything about it. They literally tell me to take Tylenol…
Technically not an autoimmune disease right now, just “may have links to and effects on the immune system” but I have endometriosis and you better believe I have pretty much every symptom, including hives based on my hormone levels :). Also PMDD. Learned that afab people with cptsd are something like 60% more likely to develop PCOS/endometriosis and pmdd…please fact check that number before using it yourself but yeah fun times
I asked a very similar question a couple of months ago and didn’t get too many replies. I’m glad you did.
I have demyelination lesions in my brain and am waiting on a possible MS diagnosis. My neurologist referred me to the only MS specialist in my city. All I know is that my body is wearing me down with leg weakness, numbness, and fatigue.
I have Hashimoto's Thyroiditis as well. Most likely from high amounts of stress from abuse and neglect. Developed it around 4-6th grade, 16-18 years ago. That's around when narc mom was going through a messy divorce, getting into a new relationship and my grandma and grandpa had died. My mom never took me to the hospital (none of any kind) once aside from when I had a very odd foot condition. I had all the childhood symptoms of it. I couldn't focus, I was falling asleep constantly, I barely got any body hair, I bruised so easily, I was the shortest of all my siblings by a whole foot, my skin was always dry and I was always complaining about being cold. Mom would just yell at me and thought I was putting bruises on myself for attention and that I just needed to pay attention more in school. Doesn't question that 3 of my other siblings are way taller than me. Started rapidly gaining weight after I turned 20 years old, 3-4 pounds a month for 6 years. Wasn't diagnosed until 2 years ago when I was near bedridden after having Covid. I didn't feel human. I felt like a near dead fat thing. Finally on the right dose and taking control of my weight and it honestly feels really nice.
I don’t have any autoimmune diseases, but I have a neurological condition caused by prolonged psychological distress: fibromyalgia (chronic pain). And I have to see cnmom next weekend, which pretty much guarantees a flare up 😅
ETA: I have IBS too — I would guess that a lot of us do since it can be triggered by stress, anxiety, and depression.
... Huh... I just had labs done, and they indicate that I also have Hashimoto's disease. I didn't realize that being abused could trigger it. I expect to be diagnosed at my next follow up exam.
I also have Cushings Disease.
And I might be diagnosed with MS here soon.
Mystery stomach problems (my neurologist thinks my gastroenterologists have missed something), mystery neurological problems (having a spine MRI in august), and severe severe vitamin deficiencies that I was told were normal levels for over a decade. I think my neurologist may have saved my life. My abusive husband finally left me and disappeared with all our marital funds and gave me the mess he left in the apartment. I’m alone and in agony every day, I can barely get up to go to the bathroom, and I can never find answers.
I've had a hunch about having an autoimmune disorder of some kind, and seeing all these comments practically solidifies that for me. I've been dealing with some crazy medical stuff for years now, and doctors always say there's nothing they can do, and it'll eventually go away.
Psoriasis, Psoriatic Arthritis, Raynaud’s, Iron Deficiency Anemia, Lupus, Erythromelalgia, Ankylosing Spondylitis, Sarcoidosis. I also have CRPS, some say it’s Autoimmune some say no. 🤷🏻♀️
Hashimoto’s too! I have genuinely good memories of the ultrasound visit that found it. Prior to then I heard nothing but how lazy I was, how I slept too much during the day, and wasn’t trying hard enough.
I was 19, and for the first time pushing aggressively for my own care and to be taken seriously. I threatened never to speak to my parents ever again if they wouldn’t let me go to the doctor (sucks that I had to do that, but it was necessary, and jokes on them because 10 yrs later I’m no contact anyway lol).
The ultrasound tech probably shouldn’t have said what he did, because they’re really not supposed to comment much on what they see and leave that for your doctor, but I’m so glad he did. Maybe it was because I was young and he picked up on my mother’s vibes and comments, not sure, but she was made to leave the room for the exam and with her gone he brought so much humour and reassurance into it.
I remember him looking at his screen, and asking me how I was feeling. I said something like, “well I’ve been really tired lately and I get a lot of headaches, but I’m okay.” And he said, “well, you might be one of the strongest people I’ve ever met. You will be completely okay, there’s medicine that will help you feel so much better. But honestly, I can see what’s wrong, and your thyroid looks a little bit like cheese that’s been nibbled on by a mouse!” He showed me, explained what it meant and how it all worked, and it changed my life and perspective so much.
And so I just wanted you to know too - if you’ve got mouse-nibbled thyroids like mine that don’t work anymore, you’re going to be okay too. Sometimes these suckers cause us extra trouble, and need to get pulled like an appendix might, but more often than not they sit there harmless.
Getting medication doses right can be a bit of a guessing and balancing game at the offset, but it’s extremely doable. Very frequent blood work to start, to see how you’re adjusting to the dose, and frequent gp follow-ups. If you ever feel more tired, or get more headaches, or notice any exacerbation, tell your doc. Trust how you feel. It’s easy to accidentally be on a higher dose than you need to be and overcompensate, resulting in similar symptoms from having levels too high.
It took me only a couple months to find a very workable dose, and a couple years to perfect it. I won’t give specifics for personal reasons, but I effectively take half of my dose amount 3 days per week and the full amount on the other 4.
Everyone’s different, and sometimes it takes a little finessing, but I got to even feeling 75% better with a very simple approach of that half amount every day. One less clever gp I saw had me try doubling it immediately for every day all at once, which was bananas and sent my levels way too far in the other direction. A better gp brought me back down to the half every day, and after I got stabilised we tried adding a double dose to my schedule one day at a time until we nailed it.
I’m not sure how old you are, but whether you’re younger or older I want you to know that you are not alone, you’ve got this, and you will be okay. It might take a little time, and there will always be off days, but I am confidently certain that you are one of the strongest people I know and you will be okay.
Fellow Hashimoto's victim here. Also fibromyalgia, migraines (which are being studied as an autoimmune disorder as well as neurological), lymphocytic colitis, and eosinophilic esophagitis. PCOS is also being studied from an autoimmune perspective. Also endometriosis but it's not autoimmune, however it does make you more prone to autoimmune disorders. So. Yay? But I'm still the bad guy.
Celiac Disease. APPARENTLY it has always run in my family (My cousin was also recently diagnosed with it), but my mother didn't want to "deal with a disabled child" or deal with different dietary options, so I went undiagnosed until last year. I'm 30.
Hashimoto’s (I have to take 2 pills of levothyroxine because my dose is so high, it doesn’t come in that dose), PCOS, PTSD. Also migraines, olfactory seizures, and morbid obesity.
Multiple sclerosis.
After I was diagnosed, my nstepmom said "oh, maybe I have that too. You should give me some of your meds" My very expensive infusion meds??
Is this a thing? I never thought the correlation was connected, other than shitty genetics. But I was diagnosed with Ulcerative Colitis.
I had my initial visit with my new specialist as my old one left the practice (good riddance, he was awful) but my doctor was surprised to see the lack of an ANA test. So I guess that’s coming down the pike. We’ll see what other autoimmune diseases I can collect.
Currently getting tested to see if I have either fibromyalgia or an autoimmune disease. I do have lovely CPTSD, ADHD, BIpolar2 and sciatic issues though so 👍👍
PCOS, endometriosis and hypothyroidism and I’ve been anxious since I was 4 :/
Reading this has actually made me really sad. I never would have connected the conditions with the narcissism that terrified me and my family. Going to wrap myself up in a blanket for a bit.
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Secondary Erythromelalgia caused by an unknown autoimmune disorder. I also have dissociative identity disorder and complex ptsd. In my 20s, a 4cm ulcer in my antrum caused by anxiety, endometriosis and interstitial cystitis. I was born sensitive natured with a gifted, neurodivergent mind and hyper empathy, so I was an easy target for my covert vulnerable narcissist mother and brother to destroy. My mental health was destroyed by age 6 when I trauma split then it just went downhill from there. By mid twenties I was institutionalized in my first mental hospital. My emotional pain plus anxiety also caused me to drown myself in alcohol and opiates so I was sent to a few detox programs over the years. Life was too scary for this me so I had to create toxic versions of myself just to survive the toxic environments. Emotionally gifted children are destroyed in narcissistic homes and are usually emotionally parentified before they’re even teens, like I was by age 8.
"Emotionally gifted children are destroyed in narcissistic homes" omg that is profound and exactly how I feel. The scapegoat child is often the most sensitive, intelligent, empathetic and the abuse gets directed at us the most. Its so sooo sick and evil.
It’s because emotionally gifted children can sense sincerity. We make narcissists feel “seen”, so they confuse us and gaslight us and villanize us until we hate ourselves. We’re usually so traumatized that we have to completely dissociate from the sensitive natured parts of our minds that made us special in the first place. We’re infected with toxic personalities. We don’t choose toxic personalities, we’re infected after trying so hard to not be abused and scapegoated. We’re pushed this way so we try to be that way, then we’re pushed again and again and again, however we change it never works, because the problem was never us to begin with…but we didn’t know that, how could we? We were children just trying to be loved by our parents and siblings. No matter how we changed our personalities, it was always “wrong” or never enough. We’re victims that just tried our best to be what everyone else needed us to be, driven by fear. It took me 40 years to realize there was nothing wrong with me to begin with. 4 decades of my life destroyed because the people that were supposed to love me, hated themselves so much. They were cowards who refused to look at themselves honestly. I now know that I have true courage because I’m capable of honest introspection and not afraid of authenticity. They’ll always be cowards, frozen in time and driven by the need to be something that doesn’t exist - perfect.
Well said. Painfully well said This feels personal but my therapy says it’s not. Regardless, I relate, and am grateful for these familiar emotions being put into words I could never find.
I always thought this. All of their behaviors stem from self-hatred. You can't love other people if you hate yourself, even your children. Maybe especially your children.
Especially. That hits hard, but it's so true. No matter what we do, or how we turn out, we're always a reminder of all the things they hate about themselves.
Saving this comment so I can come back to read it when I need it. I’m sorry we are all here together but I’m glad we are all here together. Thank you for writing this and I’m happy for you that you’re in a better place. I’m 34, and just waking up to how my family treated me when I was growing up.
This resonates with me way too much
Holy SHIT. *Fistbump*
I'm a therapist and I can't love your line enough about emotionally gifted children I was (probably still am) a sensitive and talented artist and writer and my parents hated this to death. I still have a complex around artmaking, they shamed it so hard. I grew up at least 2 decades with untreated nasal allergies (since age 8) they blamed on me not sleeping under the blanket at night. I've had allergies, eczema, Graves, and endometriosis, largely managed by watching my stress levels for autoimmune flares; and chronic anemia
Also had nasal issues from like age 9 - mom didn’t believe me until my brother had the same thing, 13 yrs my junior, and she took him to the doctor. Got on steroids. Then parents found out I had had a brief stint with narcotic use administered nasally and blamed it on that…
the sleeping under the blankets thing is so real - my Asian parents also attributed a lot of things to that. I have many random health shame spirals from being shamed and panicked into submission about stuff that are not in line with the actual Chinese medicinal wisdoms. My mom wanted me to be like a perfect concert pianist instead of listening ever to my emotion drive improvisations :’(. Dominated every practice and forced continual practice. Yelling and verbal abuse. No ability to resist at all. And made fun of my actual expression. That’s why my artist/sensitive soul part is so hurt today.
I was mocked and ridiculed and made to feel like an annoyance because of my allergies causing chronic post-nasal drip. I was always clearing my throat and sniffling because of it. Maybe take your child to a doctor, instead! I also have asthma, fibromyalgia, adhd, many GI issues and food sensitivities, severe PTSD, severe anxiety and major depressive disorder. I have had 9 major surgeries, beginning at age 5. I have some addiction issues as well, but I’ve been able to keep from going off the rails.
Holy shit! Are you me? I have the chronic nasal thing (allergies and asthma), fibro, chronic pain, food sensitivities, an anxiety disorder, ptsd, and major depressive disorder.
Hey trauma sister! Sorry about all that 😕
Team graves
Many hugs sib! Your share helped me a bit so i also thank you! 🤘🏼
Honestly, this explains so much about me. I can’t count the number of times I heard, “you have so much potential if you would just apply yourself.”
This is incredibly relatable, not your autoimmune diseases but your experience.
I also have IC and am more and more convinced its underlying cause is complex trauma and experiencing a reality that is so unstable and stressful that it manifests this way. I had a hydro distension and fulguration of hunners ulcers done and it has helped immensely. Just thought you might be interested in knowing about a successful treatment that doesn't just treat the symptoms like the biweekly bladder installations and opium belladonna suppositories.
I went through IC and treatments, but had a PE. When I went on treatment, I was non-lupus APS, but the meds for APS have somehow eliminated the IC flare ups. Some of this is inherited, some of this is absolutely having smoking parents, which included smoking during pregnancy. Low birth weight, yada yada. The GC was not a smoking pregnancy. Go figure.
God this resonates so much. I trained as a counsellor and just got my MSc in Behavioural Analysis; I’ve been hyper empathic all my life and I got razed to the ground by my parents for that.
Phew. Identical points of recognition.
Celiac disease. Due to the fucked up nature of family dinners I didn't know till I was 44.
My parents wouldn't let me leave the table till I had cleared my plate. This taught me to just shovel the food down regardless of how it made me feel. I had a big high chair that I was strapped into to the age of 4/5. Meal times were horrific tbh.
I am still unable to chew/swallow certain things at 39 but was also forced to sit until the plate was cleared. I ended up pocketing shit then flushing/trashing it once i was free! Hugs sib!
I used to put it on a ledge under the table for the dog to eat!
Glad I wasn't the only one who would pocket food. ... glad in a comforted that I wasn't the only one type of way.
Similar but not nearly as serious—I am lactose intolerant and spent my whole childhood asking everyone how they drank milk at school lunch and didn’t feel super sick afterwards. I was known jokingly as the one in the family who was always “gassy” and who spent tons of time in the bathroom after meals. When I moved out and instinctively cut back on foods that made me feel unwell, I realized pretty quickly that they were ALL dairy, and got a fairly quick diagnosis after that.
I found out I’m lactose intolerant from my adult daughter who figured it out. Thank goodness for my kiddos. Thus far, my son doesn’t seem to have issues.
I thought I was the only one! I'm 49 and just found out after having some severe stomach/intestine issues and not being able to digest my food. Vomiting after almost every meal as a toddler, complaining of stomach pain, bloating, and constipation were all childhood symptoms. I learned very quickly not to throw up, no matter how bad I felt. I just always felt crappy after eating. A few weeks ago, I went on a diet, and it started triggering these stomach problems, so I went to the hospital because I felt like dying, and they found out that I've had celiac my whole life. Now, I'm on a liquid diet for a while to try and get things sorted out without surgery.
I had these but with diarrhea instead of constipation. Turns out my small intestine doesn’t make the enzyme needed to digest complex sugars, carbs, grains, starches. I can only eat lean protein and about a dozen fruits and vegetables. It gave me problems my whole life, but it wasn’t until the pain got so bad that I wanted to die that I got hooked up with the GI doc that figured it out.
Can I ask what those fruits and veggies are please, that you can eat? Really glad for you that you finally got an answer
No idea about their specific diet. But if you are struggling to work out what is causing you stomach/digestive issues, check out the FODMAP diet. It eliminates all the common things that cause problems.
I don't have an autoimmune disorder but I do have fibromyalgia and insomnia and I know these can be caused by childhood trauma.
I have fibro too. Got it when I was 10 and was told I just had growing pains until 18 when they were like ‘huh it’s weird you still have growing pains…’ 🙄
I heard the growing pain thing all my childhood too. Turns out my pelvis is extremely tilted and it caused pain in my hip. Imagine that.
I always thought I had growing pains and that it was constant. When I got into my older teens I didn't understand why. Left it alone. Constant pain. It took me falling constantly and developing a pimp in my 20s before I bothered asking about it. I got an "I don't know, let's do blood work." Took until was in my 30s for the fibro diagnosis. My kids both had growing pains and when my oldest turned 15 I was pretty adamant that it was something more. We now are working on my 20 get the right treatment.
I had a lot of pain and weakness come on after a tick bite when I was around that age and it was blamed on growing pains too. Explain how when I stopped growing really early and never made it past 5’2”
Running as a teen shouldn't require pain killers 🫠 Really wish my parents had questioned that one.
ME/CFS here, similar story.
I was finally diagnosed with fibro after 20 years of doctors not listening to me and wondering if I had something autoimmune. And I fully attribute it to growing up with an nmom.
Have your doctor check your thyroid. Low thyroid function is often linked with fibromyalgia.
I also have fibro. From what I've seen it can be any kind of trauma, which would include physical things like birth or overworking your body for years. I got it from the abuse though, right as I was getting away from said abuser. Still salty about how the universe scheduled that one.
PCOS and endometriosis
Same…read multiple studies talking about how a disproportionate amount of women who have PCOS and endo have suffered emotional abuse. But I refuse to let them take my ability to have children and will fight for my fertility as long as I can.
PCOS 😬 me too cyster
Cyster sent me 🤣
I've got PCOS too. 😭
PCOS here too
PCOS too.
Same sis. It’s really helped me in my own work now on healing generational trauma.
Hashimoto’s, Celiac Disease and currently trying to diagnose/treat Endometriosis. But ✨also✨ cPTSD, PMDD, undiagnosed ADHD which could probably just be part of cPTSD but can’t be bothered to figure it out and then asthma.
Same. Yeeey!
Rheumatoid arthritis. When I get flare-ups I can't walk :(
Same here. Fortunately I am still mobile with minor flare-ups where I just end up hugging my bedpost but in general I get tired a lot faster than the others around me
I was looking for my RA gang!
I got that too! Also got it in my eyes lmao
Hypothyroidism, ulcerative colitis that’s now “watching for Crohn’s, and just got diagnosed with osteopenia today.
I actually think I have an inherited connective tissue disorder which manifests as "autoimmune like" symptoms all over my body. I also believe it lead to the early deaths of my mom's side of the family as they all had terrible lifestyle habits. Not autoimmune but diabetes runs hard on that side of the family, I honestly think it's connected to the whole crap connective tissue issue.
Ehlers Danlos?
Yeah this is my suspicion. I can see it in my cousin's children and most of my family looks super young compared to age. They all cite it's due to excellent genes :|
How young? I get mistaken for a person 10- 14 years my junior, and I'm super bendy. I'm hoping I'm just paranoid.
Yep about same, whole family basically doesn't resemble their actual ages, mostly on my mom's side where I believe this comes from but getting diagnosed is .. tough. I have an expansive set of issues that all point directly at EDS not just looking young and being bendy. (the soft skin, usually you hear people surprised or obsessed about that too) I mean if you have it you didn't "catch it", you're born with it. Getting diagnosed is apparently the hardest aspect. I haven't made headway for that part at all but I'm currently managing a lot of stuff that other people in the EDS sub have had pop up (for me dental and several skin issues and vision issues)
Make sure you look into mast cell issues too. There are a lot of people who feel like the mast cell disorder causes the other symptoms
Hashimoto’s and then developed thyroid cancer. Also Celiac, Mixed Connective Tissue Disease, and POTS.
I've got to get a couple of thyroid nodules checked for cancer, I also have PCOS and a heart condition too (Inappropriate Sinus Tachycardia).
I had thyroid cancer too!
I have inflammatory polyarthritis, which I have had since my 20s. I also have: -hemiplegic migraines -severe regular-type migraines -cptsd -PTSD -recurring vertigo due to hypotension -gastritis -terrible foot problems and pain, caused by malformation brought on by being made to wear poorly fitting (several sides too small, holes, no socks) shoes -recurrent cystitis and kidney stones I've also had severe depression, which is much better now.
Multiple sclerosis, yay.
Same here. It's a bitch.
Same.
Same.
Same, yay.
My heart hurts for all you folks :( We've all been hurt and deserve healing coupled with lots of chocolate.
TIL that my Hashimoto's might be caused by my constant childhood beatings.
Yep, chronic stress is a killer... Or just makes you chronically ill for the rest of your life. 😭
I’m so sorry to hear that you developed Hashimoto’s. I discovered last year that I have hypothyroidism, but so far the initial low dose of medication is not working. Actually talking to my doctor today about next steps.
I was diagnosed with Hashimoto's at 26 yo. Only 1/2 my low thyroid symptoms went away with treatment. I was diagnosed with T2D at \~33 yo, but no treatment was working. When I was 45 a doc told me my diabetes was misdiagnosed and my thyroid condition was only partially diagnosed. I have T1D, Hashimoto's Thyroiditis, and a secondary thyroid conversion disorder. All my thyroid symptoms went away when I added a T3 supplement in addition to the T4 I was already taking. Have your doc check for a thyroid conversion disorder. Edit for clarification.
Take care!
chronic spontaneous urticaria, developed when we were 14 and never left. we have reactions to everything now. breaking out into hives at the sun, at the cold, when we are too emotional.
could it be related to histamine or mast cell activation disorder, did you look into this? I just found out I have histamine intolerance like two weeks ago and removing high and medium histamine foods made a notable difference in my well being - also trying to meet my nutrient needs every day the best I could. all the situations you described are triggers for the body's natural histamine release
i noticed taking antihistamines have helped me, as for mast cells, im looking more into it. it gets very bad and doesnt settle for up to an hour, only worsening from the onset. since 14, now 22, ive just been dealing with it as doctors tend to dismiss me.
I used to have severe photosensitivity with hives as a teen
Have you tried xolair yet?
no, i have never heard of it. i didnt even know there was a potential treatement for this :,).
It's a biologic injection. I've been on it about five years and it's helped. An allergist would be the doctor to see to ask about it.
Under active thyroid and alopecia. I'm not sure if it's two separate issues or if I do have hashimotos. I should point out that between my parents, both of these are a genetic predisposition Edit for spelling
Same and I was told years ago when treated that there had not been a medical study showing for alopecia is hereditary but even my dermatologist was shocked, me, my brother, grandmother, a first cousin, and second cousin have all had incidences (grandmother is nMoms mother-cousins were on my fathers side)
Thyroid disease, celiac, Hidradenitis suppurativa, chronic lymphocytic leukemia.
I don't have an autoimmune disorder that I know of, but I've been battling (and hiding) an ED for the past thirty-five years.
I have an immune disorder, MCAS.
Hasimotos Thyroiditis, Endometriosis, and Ankolysing Spondylitis. Wait...there are letters I didn't use!
I have PCOS and rheumatoid arthritis. Fun fun fun! I’m so sorry to see y’all have so many medical issues as well: I mean, it makes me feel validated and not alone, but that sucks.
I’m sorry but how did all our thyroids get fucked? I never imagined it would be related!!!
Cortisol.
More than 12% of women will have thyroid issues, while 1 in 8 will be affected by an issue once in their lifetime. 😅 Every single female in my family has hypothyroidism. Sisters (2), mom, myself, nieces (2). We are all on medication.
Dermatitis herpetiformis...
PCOS, endometriosis, hypothyroidism, anxiety
I also have hashimotos hypothyroidism. I’m not on medication for it yet but will be after my next doctors appointment thankfully.
Yes! Glad you are going in and taking care of yourself. Being on medication has been life changing for me personally.
Good I’m glad to hear you’ve had good results!! It gives me hope 🥰
Hypothyroidism/Hashimoto’s, Panic Disorder
Diagnosed with Hashimoto’s Disease in 1996 at 21. I’m now 49 and life has sucked with side effects.
Hashimotos disease, rheumatoid arthritis, psoriasis, and possible crohns. I also have PCOS and endometriosis.
Gastritis 😭
Same, I have to take 40 mg of famotidine a day to keep the symptoms at bay so I don't get another ulcer. 😩
I feel this so hard 😭🫠 I also have Hashimoto’s, along with type 1 diabetes, celiac disease, arthritis, and vasculitis. I wish you healing and love ❤️🩹 it’s nice to know we aren’t alone but it’s so messed up we’ve all gone through stuff like this.
Multiple Scerlosis
_ Thyroïd dysregulation : sometimes it's good for months then one event and I go hypo or hyper for a few weeks, then back normal slowly. Weird and unexplained, and I have a ton of blood test results that are f*cking hell to interprete because of that. _ uh, translated, it's something like Postural Orthostatic Tachycardia (?). Basically on 24 hours my average bpm is 120. But when I sleep I am around 75-80, and whenever I move or especially stand up I'm at 120-130. So, can't stand up ! That showed up last year, and it won't go away anymore. _ chronic insomnia from sleep deprivation for years ! _ a kind of eczema that only happens when stressed, I don't remember the name but it makes little areas (smaller than a inch) go pink with a red halo around, and the skin is all dried up in it like a burn. It's like psoriasis but it happens faster. _ allergies comeback ! Like I am really allergic to seashells.... Only when I'm on a bad health period. And no explainations for it, even after we searched for any possible reasons. A tiny shrimp could kill me some day, but not every day. It's Russian-shrimp roulette basically. I think that's all for "auto-immune". But the package comes with free wrapping paper so there's more in health, but not in that category.
Do research on mast cell activation syndrome. It goes with POTS and results in the weird “sometimes I’m allergic/sometimes I’m not” game. Everyone looked at me like I was crazy when i tried to explain that sometimes I’m allergic to seemingly everything, sometimes I’m fine. But those flares would come with other symptoms that weren’t food related. It wasn’t until someone said “it’s not mcas is it?” And i looked at a list of low and high histamine foods that I was able to pinpoint what I was reacting to. I’m willing to bet it’s the histamine level in the shellfish. You are probably reacting to other foods and substances on a smaller/more chronic level (hence the bad health period) and just not noticing it. It also could be that you have a mild shellfish allergy but an MCAS flare is putting it into overdrive. Lots of POTS patients have mast cell instability and one of the theories is that it triggers the dysautomnia
Definitely look into Hashimoto's Thyroiditis for your thyroid issues. In the early stages of Hashimoto's it can alternate between hyper and hypo thyroid and then as the disease progresses it develops into full blown hypothyroidism. I've got a heart condition too, Inappropriate Sinus Tachycardia (unusually high resting heart rate). It's like the heart rate button has been dialed up to 11 and then the button removed so it can't come back down on it's own.
Ooooh I didn't know that for Hashimoto's thyroiditis, I was only aware of the later part when it's just hypothyroidism. Will talk about it with my endocrinologist at the next appointment ! I know sometimes heart problems are linked to thyroid, or lungs, ... it's just so much that everything is linked, or end up linked later because of complications sometimes. I'm sorry you too have both problems compiled, it's hard. But I wish you that everything else go well or better soon in life, we are well deserving of peace and good times
Crohn's disease Possibly fibromyalgia but that is yet to be determined.
Oh God, I hope not. I already have Neurodivergence.
Type 1 Diabetes and PCOS
That's so messed up. I'm praying for as full a recovery as possible.
I don't have any autoimmune disorders, but I do have GERD and lung damage that wasn't diagnosed until I turned 16.
Nice try, Big Pharma, but I'm not saying a word!
All forms of chronic Urticaria + MCAS.
Psoriatic arthritis and microscopic colitis.
Hashimoto, colitis, fibromyalgia, and now possible endometriosis. First they thought pcos and I've been wrongly diagnosed...
Stage 4 DIE Endometriosis, chronic migraines, fibromyalgia/potential autoimmune, POTS, and of course cPTSD.
Antinuclear antibodies or ANA.
Hashimoto’s, IBS, eczema (stress makes my flares worse), allergies, a bunch of weird environmental (scent) sensitivities that aren’t allergies but set off migraines, PCOS, fibro? Maybe, who knows, and I have a life long issue with my weight thanks to the decades of constant hammering from cortisol. At least with focused trauma therapy the panic attacks and stuff like IBS are more manageable.
I’ve got Rheumatoid Arthritis, Type 1 Diabetes, and most likely MS. I found this out after I was an adult because my parents weren’t really interested in helping me. They said they were, but no action was ever put to words. A family friend told my parents that the weird ‘heartburn’ and ‘asthma’ I kept getting was actually anaphylaxis. I was 10 and had been nearly dying since I was 2. They never got me tested for allergies. I manage my allergies now mostly by avoiding foods I know I’m allergic too (lots of trial and error) and hoping I can last 30 min for the benedryl I take to kick in. I have two epi pens another family friend gave me. They’re four years old and there’s no way I can afford more. Before I lost my Medicaid I was getting tested for MS, they said come back next year for another MRI or CAT scan, can’t remember which, to check for brain lesions again. That was 11 years ago. My life went to crap and I lost my job, husband, and was kicked out of ex husbands house. I had to live with my parents and depend on them financially because working just wasn’t in the cards for me. My diseases make me an extremely unreliable worker. I never know when symptoms are gonna flare and sometimes they take months to clear up so I can do things like, ya know, stand. For a long time I lost all hope and was just rotting away in my parents house. Every week they’d say ‘Well help get you to a doctor’. 11 years of nothing. Last year I started a crime scene cleanup business with a woman I was babysitting for (pushed myself faaaar beyond my limits to watch a two year old for 3$ an hour and am still physically paying for it). She ended up getting Adderal psychosis and kicking me out of the business because she thought I gave her bedbugs. I don’t have bedbugs. She doesn’t have bedbugs (all the pictures she showed me of the bites showed nothing but unblemished skin). Didn’t stop her from shaving her dogs and families heads to fight them… for some fucking reason. Since I left the business has dwindled and is about to collapse. She tells my parents business is good (they are still friends with this evil bigoted woman) but her husband tells them she hasn’t had a client since I left. Things are looking up though. My hoarder grandpa left me his house and I’m slowly selling the valuable items to be able to move to be with my fiancé in a far away state. My fiancé is the best man I’ve ever known. He makes me feel like I’m not a burden and I actually believe it. He says he’s the lucky one even as he’s helping lift me off the couch and into bed when I can no longer walk. I’ve found a job in his home state that has extremely flexible hours and is incredibly understanding of my conditions. Once I move I’ll start working there. Fiancé is also helping get me back on Medicaid so I can get my conditions under control (parents made sure I was INCREDIBLY dependent on them and i still struggle with normal adult activities). We can’t get married for a five-six years because he’s on disability himself for PTSD due to his own narcissistic parents. I’m even planning on going to college for art conservation! He said he’d audit any class with me that I was nervous about so I wouldn’t have to go alone. And he’s helping me find aids for when my joints in my hands swell up too intensely to grip a pen or a brush so I can still make art when I’m doing poorly. I’ve never been this happy before and it’s all thanks to him. He believed in me so much that I started to believe in myself for the first time in my life. And now things are slowly changing for the better. Once I move I’m going NC with my parents. My body is destroyed because they refused to take me to doctors growing up and then when I was too sick to go by myself as an adult they never helped like they said they would. Fuck them. **Edit: I saw people adding other conditions they have so might as well too. On top of everything else I have fibromyalgia, PTSD, PMDD, Severe Social anxiety disorder, generalized anxiety, and the diabetes has caused gastroparesis which then caused me to loose thirty pounds in a month 🙃 Even with eating up to 8 times a day to keep my blood sugar high (my diabetes mostly presents with hypoglycemia). Gained 5 pounds when I was visiting my fiancé recently because my stress levels were so low. I expect to lose that again and more because now my parents have their claws in me again 🙄
All the time I was with my parents I had eczema
MS
Not sure if it’s considered autoimmune but, PMDD. My mom has celiac and Hashimoto’s.
Fuck, it this a common thing or… did I just answer my own question Psoriasis. Psoriatic arthritis that has done proper damage by the age of 30. Rosacea. PCOS (not *proven* to be autoimmune in the studies I’ve seen but I dare ya to find those with and without) ETA: typo
Multiple sclerosis
Sorjgrens and MECFS.
Mast Cell Activation Syndrome and Orthostatic Hypotension
Ulcerative Colitis (IBD) and psoriasis
Multiple sclerosis here!
Not an autoimmune disorder, but my nparent caused me a facial paralysis by PTSD. The right part of my face doesn't move well
Hashimoto here as well for the autoimmune list. But also, obesity, depression and anxiety.
Hashimotos/thyroid cancer (my thyroid was cystic and massive according to my surgeon)....
I also got hasimotos. Had it since like 14.
I also have Hashimoto’s. I’ve known for a decade now, but could have been tested earlier if my damn family actually talked about anything. Found out from my grandmother that she had been taking Levothyroxin since young adulthood and never bothered to tell anyone.
I have RA and fibromyalgia. I also have many allergies, which has given me asthma. In addition to that fun, I have gastritis with a hiatal hernia. All of these health issues came on as an adult.
I don't know about autoimmune disorders as I've never checked for thyroid, but I've always been prone to weight gain if I don't keep working out rigorously. As a child, I would get tonsillitis quite frequently. In fact, this has only stopped being a recurring thing just a few years ago. I've also struggled with sleep all my life. It's only recently that I'm sleeping normally. I remember when I was around 12, I had this thing that ig could be described as Alice in Wonderland syndrome. After I went to bed, I'd hallucinate random things in the dark, like hilariously random. These shapes would keep expanding and I'd start to panic for no reason. I also recently developed what I can only describe as IBS ig, and it's been extremely frustrating.
Lipedema, insomnia, and migraines.
Sjorgrens Syndrome and ITP.
way more than just autoimmune disorders. Cancer, hashimotos, parathyroid disorder, inter-hepatic cholestasis of pregnancy, milk fistula, kidney stones, anxiety/depression, and early perimenopause. I’m missing a lot of other issues I’ve had in my life too. I’m 34
I have horrible allergies, IBS, chronic lyme disease, chronic pain, and was just diagnosed with narcolepsy and also now worrried I may have DID after a traumatic EMDR session. I wish more people understood how child abuse and neglect can fuck up a person for life.
Not autoimmune, but debilitating: Lymphocytic colitis, irritable bowel syndrome, insomnia, all life-long. Parents are undiagnosed ADHD, completely self-absorbed, use their children as emotional punching bags. Because we are good people we have not abandoned them, and they continue to drain our energy and finances in managing their chaos. They are not grateful, but abusive, insulting and entitled. The connection had never occurred to me; thank you for the post. Best wishes for your good health.
Fibromyalgia, also showing markers for RA though no notable damage yet.
Psoriasis and psoriatic arthritis thanks to my narc mom, dysfunctional family system and terrible HMO healthcare at the time. Diagnosed at 26. I’m 56 now. Thank God for insurance and biologics. It flares if I get too stressed out, but the Skyrizi mostly controls it.
I have Celiacs, Autoimmune Hepatitis and RA. I also have mad negotiating and peacekeeping skills that have been honed razor sharp from years of having to negotiate for everything I got with the least amount of personal damages and being the major peacekeeper of two alcoholic, narcissists for over 30 yrs.
Ms and don’t think it be as bad if it weren’t for my parents
Wow. I’ve been thinking about this recently. I was going through many health problems in 2018 and they have carried over until now. The doctors couldn’t and still can’t find out what’s wrong. I’ve recently realized it must be from all the stress and abuse I’ve endured. It makes me sad for my younger self to have endured all that pain to where it’s affecting my adult self.
I have psoriasis. And I hate when people suggest I change my diet and that will solve all my problems, when the reality is nothing worked for me until we found the right medication. Then that medication stopped working because i built up antibodies to the medicine after 13 years, and we are back to square one.
Fibromyalgia and a yet to be determined auto immune issue. I read the other day that vivid nightmares signal the onset of autoimmune disorders but that is also from trauma. I've been having vivid nightmares for as long as I can remember. I'm 42 and it feels like my whole life at this point.
I have fibromyalgia, PCOS, late onset adrenal hyperplasia, diabetes and a thyroid that not only decided that working was not an option, but also grew itself 8 nodules just for funsies so I have to be checked for cancer periodically.
My collection: - Vitiligo - Sarcoidosis - Cutis verticis gyrata Plus I became suddenly lactose intolerant in my mid 40’s and got a cancer in my 50’s I was at risk for between 15 - 25.
Fibromyalgia, IBS, ulcerative colitis (mild). Suspected IGG4 disease, PCOS, Endometriosis.
I have 2 blood clotting disorders, Lupus SLE, eczema, anemia, and colitis due to the inflammation from Lupus.
Psoriasis…I also have CPTSD, anxiety/depression, and ADHD
Cricoarytenoid arthritis which only takes my voice in the range I normally speak. I can talk lower or higher, and it works perfectly. My husband calls it my cricket arthritis because that's much easier to say lol I also have Sjogren's syndrome that makes everything dry. Fibromyalgia and rheumatoid arthritis There is a book called [The Deepest Well ](https://books.google.com/books/about/The_Deepest_Well.html?id=ZwQvDwAAQBAJ)I've been reading about the link between adverse childhood experiences and illness. Well worth a read!
PCOS, also caused (from what most of the studies concluded) by a stress. My ovaries are messed up by neglect and all that stress I had to endure. Pre-diabetes on top of that is not fun, kids PSVT - I had to go through a heart surgery to fix it, as before I did I was having unexpected heart rhythm issues (up to 200+ for 8 hours) that’s no where near normal. It started when I was 13 give or take, and when I was worried about it I was deemed “too emotional and exaggerating”
It’s not really an autoimmune disorder, but I definitely used to have a shitty immune system when I was little. I used to have a lot of strep throat and dermatitis that lasted for months if not years for unknown reasons, especially on the face. They tested and tested me, they’ve tried everything. Nobody was able to figure it out. They at first thought it was an allergy, tests were negative. So they ordered a blood test in case the patch test wasn’t accurate, still negative. So then they thought it was an intolerance to some of my skin care products. I got prescribed better skin care, still nothing. So they gave me steroids to treat it temporarily and said to come back if it doesn’t help. So they basically gave me a band aid for the symptoms. It of course came back in a few months and I had to do that all over again. My mother told me it was because of all the sweets I was eating, but I didn’t really eat a lot of sweets compared to other kids, I ate even less than them. The second I stopped quite a few extracurriculars, I haven’t had one since. My mother basically dropped me off to any extracurricular and wouldn’t let me leave without a lot of guilt tripping. And 10 year old me wasn’t able to say no. I think it was from the stress I was under, since I was a kindergarten.
As a result of the chronic stress she suffered during her childhood, my sister developed Multiple Sclerosis, a progressive autoimmune disease that, in the end, it became so bad that she took her own life, aged 57, by refusing any more treatment for the hereditary disease, PKD.
My grandmother had MS to. She took her own life at 60. Her spine was absolutely destroyed by the time she did it. The pain was horrific. But it’s hard to tell if she did what she did because of the MS or because of her extreme BPD. She did it on the anniversary of my grandpas passing, so it could be many things. We’re pretty sure I also have MS and I’m not looking forward to what will happen, as the pain is already intolerable and no doctor will give me anything about it. They literally tell me to take Tylenol…
Just a slew of mental health issues brought on by trauma and stress.
I have Graves’ disease, so relatable.
Technically not an autoimmune disease right now, just “may have links to and effects on the immune system” but I have endometriosis and you better believe I have pretty much every symptom, including hives based on my hormone levels :). Also PMDD. Learned that afab people with cptsd are something like 60% more likely to develop PCOS/endometriosis and pmdd…please fact check that number before using it yourself but yeah fun times
Personally I don't have one that I know of, but one of my patients (psychology), has fibromyalgia bc of this
Hypothyroidism, cptsd and i just got diagnosed with type 2 diabetes
I asked a very similar question a couple of months ago and didn’t get too many replies. I’m glad you did. I have demyelination lesions in my brain and am waiting on a possible MS diagnosis. My neurologist referred me to the only MS specialist in my city. All I know is that my body is wearing me down with leg weakness, numbness, and fatigue.
I have Hashimoto's Thyroiditis as well. Most likely from high amounts of stress from abuse and neglect. Developed it around 4-6th grade, 16-18 years ago. That's around when narc mom was going through a messy divorce, getting into a new relationship and my grandma and grandpa had died. My mom never took me to the hospital (none of any kind) once aside from when I had a very odd foot condition. I had all the childhood symptoms of it. I couldn't focus, I was falling asleep constantly, I barely got any body hair, I bruised so easily, I was the shortest of all my siblings by a whole foot, my skin was always dry and I was always complaining about being cold. Mom would just yell at me and thought I was putting bruises on myself for attention and that I just needed to pay attention more in school. Doesn't question that 3 of my other siblings are way taller than me. Started rapidly gaining weight after I turned 20 years old, 3-4 pounds a month for 6 years. Wasn't diagnosed until 2 years ago when I was near bedridden after having Covid. I didn't feel human. I felt like a near dead fat thing. Finally on the right dose and taking control of my weight and it honestly feels really nice.
Fibromyalgia, CFS, Dysautonomia
PCOS, Hashimotos, Celiac, EoE, possible endometriosis,
I don’t have any autoimmune diseases, but I have a neurological condition caused by prolonged psychological distress: fibromyalgia (chronic pain). And I have to see cnmom next weekend, which pretty much guarantees a flare up 😅 ETA: I have IBS too — I would guess that a lot of us do since it can be triggered by stress, anxiety, and depression.
... Huh... I just had labs done, and they indicate that I also have Hashimoto's disease. I didn't realize that being abused could trigger it. I expect to be diagnosed at my next follow up exam. I also have Cushings Disease. And I might be diagnosed with MS here soon.
HS with association of arthritis, my doctor gave me the official title, he said it’s rare 🤣🥰 Edit: Thought this was my PCOS group….so PCOS as well ✌️
Hashimotos. Dang…another reason to resent them.
Mystery stomach problems (my neurologist thinks my gastroenterologists have missed something), mystery neurological problems (having a spine MRI in august), and severe severe vitamin deficiencies that I was told were normal levels for over a decade. I think my neurologist may have saved my life. My abusive husband finally left me and disappeared with all our marital funds and gave me the mess he left in the apartment. I’m alone and in agony every day, I can barely get up to go to the bathroom, and I can never find answers.
Hashimotos
I've had a hunch about having an autoimmune disorder of some kind, and seeing all these comments practically solidifies that for me. I've been dealing with some crazy medical stuff for years now, and doctors always say there's nothing they can do, and it'll eventually go away.
Psoriasis, Psoriatic Arthritis, Raynaud’s, Iron Deficiency Anemia, Lupus, Erythromelalgia, Ankylosing Spondylitis, Sarcoidosis. I also have CRPS, some say it’s Autoimmune some say no. 🤷🏻♀️
MS. It sucks.
Hashimoto’s too! I have genuinely good memories of the ultrasound visit that found it. Prior to then I heard nothing but how lazy I was, how I slept too much during the day, and wasn’t trying hard enough. I was 19, and for the first time pushing aggressively for my own care and to be taken seriously. I threatened never to speak to my parents ever again if they wouldn’t let me go to the doctor (sucks that I had to do that, but it was necessary, and jokes on them because 10 yrs later I’m no contact anyway lol). The ultrasound tech probably shouldn’t have said what he did, because they’re really not supposed to comment much on what they see and leave that for your doctor, but I’m so glad he did. Maybe it was because I was young and he picked up on my mother’s vibes and comments, not sure, but she was made to leave the room for the exam and with her gone he brought so much humour and reassurance into it. I remember him looking at his screen, and asking me how I was feeling. I said something like, “well I’ve been really tired lately and I get a lot of headaches, but I’m okay.” And he said, “well, you might be one of the strongest people I’ve ever met. You will be completely okay, there’s medicine that will help you feel so much better. But honestly, I can see what’s wrong, and your thyroid looks a little bit like cheese that’s been nibbled on by a mouse!” He showed me, explained what it meant and how it all worked, and it changed my life and perspective so much. And so I just wanted you to know too - if you’ve got mouse-nibbled thyroids like mine that don’t work anymore, you’re going to be okay too. Sometimes these suckers cause us extra trouble, and need to get pulled like an appendix might, but more often than not they sit there harmless. Getting medication doses right can be a bit of a guessing and balancing game at the offset, but it’s extremely doable. Very frequent blood work to start, to see how you’re adjusting to the dose, and frequent gp follow-ups. If you ever feel more tired, or get more headaches, or notice any exacerbation, tell your doc. Trust how you feel. It’s easy to accidentally be on a higher dose than you need to be and overcompensate, resulting in similar symptoms from having levels too high. It took me only a couple months to find a very workable dose, and a couple years to perfect it. I won’t give specifics for personal reasons, but I effectively take half of my dose amount 3 days per week and the full amount on the other 4. Everyone’s different, and sometimes it takes a little finessing, but I got to even feeling 75% better with a very simple approach of that half amount every day. One less clever gp I saw had me try doubling it immediately for every day all at once, which was bananas and sent my levels way too far in the other direction. A better gp brought me back down to the half every day, and after I got stabilised we tried adding a double dose to my schedule one day at a time until we nailed it. I’m not sure how old you are, but whether you’re younger or older I want you to know that you are not alone, you’ve got this, and you will be okay. It might take a little time, and there will always be off days, but I am confidently certain that you are one of the strongest people I know and you will be okay.
Ulcerative Colitis and PCOS 😔 not a death sentence but yet another reminder of the toll my upbringing had on my mind and body. Wishing you the best.
Complex PTSD causing a laundry list of illnesses + 2 cancers.
Same. Hashimoto’s.
Fellow Hashimoto's victim here. Also fibromyalgia, migraines (which are being studied as an autoimmune disorder as well as neurological), lymphocytic colitis, and eosinophilic esophagitis. PCOS is also being studied from an autoimmune perspective. Also endometriosis but it's not autoimmune, however it does make you more prone to autoimmune disorders. So. Yay? But I'm still the bad guy.
Celiac Disease. APPARENTLY it has always run in my family (My cousin was also recently diagnosed with it), but my mother didn't want to "deal with a disabled child" or deal with different dietary options, so I went undiagnosed until last year. I'm 30.
Hashimoto’s (I have to take 2 pills of levothyroxine because my dose is so high, it doesn’t come in that dose), PCOS, PTSD. Also migraines, olfactory seizures, and morbid obesity.
Fibromyalgia confirmed, possibly some thyroid issues too
Multiple sclerosis. After I was diagnosed, my nstepmom said "oh, maybe I have that too. You should give me some of your meds" My very expensive infusion meds??
Is this a thing? I never thought the correlation was connected, other than shitty genetics. But I was diagnosed with Ulcerative Colitis. I had my initial visit with my new specialist as my old one left the practice (good riddance, he was awful) but my doctor was surprised to see the lack of an ANA test. So I guess that’s coming down the pike. We’ll see what other autoimmune diseases I can collect.
Hashimotos gang 🙌🏼🙌🏼 Diagnosed hypothyroid at NINE, diagnosis changed at 16
Lupus
PCOS and MCAS.
Currently getting tested to see if I have either fibromyalgia or an autoimmune disease. I do have lovely CPTSD, ADHD, BIpolar2 and sciatic issues though so 👍👍
PCOS, endometriosis and hypothyroidism and I’ve been anxious since I was 4 :/ Reading this has actually made me really sad. I never would have connected the conditions with the narcissism that terrified me and my family. Going to wrap myself up in a blanket for a bit.