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Does anyone else have autoimmune diseases?

Somnid

Member
My wife has Hashimoto's. They tell you to just take a thyroid replacement pill and everything is normal but fuck that, it never is for her. She gets skin rashes, fatigue, nausea in sunlight, random pains, bowel issues etc. We've been to a bunch of doctors and they basically have nothing to offer and it's been a frustrating and expensive pain-in-the-ass. It's kinda amazing how common this condition is and how nobody really gives a fuck. probably because women are way more likely to get it than men. Removing gluten from our diet has helped some of the symptoms tremendously despite her definitely testing negative for celiacs.
 

JP_

Banned
Crohn's, but thankfully my symptoms are mild enough where I can manage with diet, but it's still a big tax on my quality of life.
 

Earendil

Member
Like most chronic diseases, fibromyalgia comes in many different brands and flavors. Some people are more or less functional and others are mostly bedridden, like myself. Mine has also gotten steadily worse over time.

My apologies, I should have been clearer. I meant that what I deal with pales in comparison, I did not mean to speak for everyone with FM. I'm sorry for the pain you deal with, and I hope you are able to find something that brings you a measure of relief.
 

pixelation

Member
Cheers. One more hip op this year and then hopefully that's it for a good while.

Sorry about your Dad. It's such a bizarre disease and seems to progress at completely different speeds and to completely different extremes in every person that has it.

Yes it does!, the time elapsed since my Father got it and the time he died was mere weeks from what i remember (i was a kid so i don't remember exactly how many weeks), the problem was that they didn't catch it on time. But it's so cool that you survived it my man!, Godspeed with the hip op!
 

jb1234

Member
My apologies, I should have been clearer. I meant that what I deal with pales in comparison, I did not mean to speak for everyone with FM. I'm sorry for the pain you deal with, and I hope you are able to find something that brings you a measure of relief.

I wasn't being adversarial, dude, just pointing out my experiences and how illnesses can deeply vary between people. We're all in this together. :)
 

Media

Member
My wife has Hashimoto's. They tell you to just take a thyroid replacement pill and everything is normal but fuck that, it never is for her. She gets skin rashes, fatigue, nausea in sunlight, random pains, bowel issues etc. We've been to a bunch of doctors and they basically have nothing to offer and it's been a frustrating and expensive pain-in-the-ass. It's kinda amazing how common this condition is and how nobody really gives a fuck. probably because women are way more likely to get it than men. Removing gluten from our diet has helped some of the symptoms tremendously despite her definitely testing negative for celiacs.

See that makes me wonder too if doctor's don't study these diseases like the should cause they tend to hit women more than men. My new one is is a ratio of 9-1 women having it. I feel like a lot of doctor's don't take my pain seriously either because I'm a woman.

And I mean stuff like RA, sjogrens and lupus, which are the three MOST common autoimmune diseases but stuff like diabetes 1 and chrons are more well known because they effect men as equally? I dunno
 

MrOogieBoogie

BioShock Infinite is like playing some homeless guy's vivid imagination
Are most autoimmune diseases symptomatic? If not, how are many of them detected?
 

Media

Member
Are most autoimmune diseases symptomatic? If not, how are many of them detected?

They tend to be yeah because it's your own immune system attacking parts of your body. Different parts for different diseases. Finding out which one or ones can't be a bitch though. Don't always show up in blood work.
 

Zertez

Member
I've had Crohns for over 20 yrs now. It has been rough to say the least. I have had countless hospital stays, dozen surgeries or so, tried numerous medications, and spent too long taking insane amounts of pain meds. I spent 50 days in the hospital last year until I got sick of doing it. They finally let me out of the hospital with a PICC line, TPN, and an assortment of medications.

Many times I feel like a lab rat trying things that help very little. A good support system and people who are going through a similar situation helps a lot. AI diseases can take so much away from you, try to focus on the things you have instead of what you have lost.
 

Media

Member
I've had Crohns for over 20 yrs now. It has been rough to say the least. I have had countless hospital stays, dozen surgeries or so, tried numerous medications, and spent too long taking insane amounts of pain meds. I spent 50 days in the hospital last year until I got sick of doing it. They finally let me out of the hospital with a PICC line, TPN, and an assortment of medications.

Many times I feel like a lab rat trying things that help very little. A good support system and people who are going through a similar situation helps a lot. AI diseases can take so much away from you, try to focus on the things you have instead of what you have lost.

So sorry man, I've had friends with chrons, and it's rough.

And you are right, I've been in a kinda depressed state for a few years now because my diseases have taken so much from me. I need to focus on what I can still do.

I danced with my daughter in the kitchen a few days ago and had a blast. It caused a flare but it was worth it.

I can still play video games for short periods of time, can still swim (though I pay for it the next day of course) can still paint and sing.

The worst I think is that I'm not sure I'll ever be able to get a job. I've been a house wife for 17 years, and now that the kids are older I was looking forward to entering the work force but...yeah.
 

Xtyle

Member
Not auto immune but I have thalassemia. My condition is probably mild or medium. I don't know for sure since DNA testing was apparently not covered by my insurance at the time which is unbelievable (the doctor said I didn't qualify for it because their reasoning is that I have lived my life with it and I was still alive so doctors didn't think finding out what type and severity level was neccessary).
 

Seirith

Member
Are most autoimmune diseases symptomatic? If not, how are many of them detected?

I started having random pain in my hands, that would seem to come and go at first, I dealt with it for a while because I thought it was from overuse of my hands since I was in grad school, working in HR and working on campus with computers but it kept getting worse so I went to my doctor. She ran a bunch of tests and I came back with a positive ANA and a sky high sedimentation. She sent me to a Rheumatologist, took me 6 months to have my first appointment, which by that time I am in such pain I couldn't stand it. He diagnosed me with RA.
 

arigato

Member
Chronic Lyme disease and co-infections here, along with sjorgens syndrome and Celiac as well. Being birthed into a place like Flint, Michigan also left me brain damaged and a lot sicker than if I was lucky and born in a place such as New Zealand or Netherlands where the tap doesn't literally kill you. The persistent chronic dry mouth is extremely annoying and sometimes makes swallowing certain food either very difficult or impossible. My weaker than average kidneys also hasn't helped, what a nice inheritance from ignorant past generations eh? Chronic pain symptoms are tolerable but I feel that they're about to get much worse sadly..
 

Media

Member
My wife has ITP and lupus. Almost like clockwork she winds up in the hospital every year and half for an ITP flare up.

Two of my niece's have ITP. One of them has three kids, and can't get her tubes tied because of bleeding worries. And her asshole husband is too afraid of the pain of getting snipped. Ugh.

So many autoimmune diseases in my family, it's insane.
 
Type 1 diabetic here. Got diagnosed at age 33. My Dad has chrones and my sister has stills.

This is pre existing condition the thread.
 

Media

Member
Random question for Humira users: am I just a big wuss or does the shot hurt like a motherfucker? I was on the autoinjector bit switched to the syringe so I could go slower but it still feels like lava.
 

Earendil

Member
I wasn't being adversarial, dude, just pointing out my experiences and how illnesses can deeply vary between people. We're all in this together. :)

Cool. I guess I get overly paranoid about sticking my foot in my mouth and offending people sometimes.

EDIT:

Personally, the worst part of having FM is not the pain (although that sucks), but rather the fatigue and brain fog. I'm an intelligent person who used to be able to make reasoned arguments and have good debates with people on a variety of topics. Now, I'm just a blubbering idiot most of the time, unless I can take six hours to form a complete thought.
 

jb1234

Member
Cool. I guess I get overly paranoid about sticking my foot in my mouth and offending people sometimes.

EDIT:

Personally, the worst part of having FM is not the pain (although that sucks), but rather the fatigue and brain fog. I'm an intelligent person who used to be able to make reasoned arguments and have good debates with people on a variety of topics. Now, I'm just a blubbering idiot most of the time, unless I can take six hours to form a complete thought.

Yeah, the pain started out moderate and then because severe later on. The exhaustion hit first. I've actually had to give up on text-heavy games (like Planescape) because my brain just can't focus enough to retain the information.
 
Ulceratative Colitis (bowel removed at 13 ) and Ankylosing Spondylitis (on Humira).

Humira has done wonders for me but I do worry about the long term implications of being on it.

It's an absolute ballache but life goes on. People don't realise I have a disability until I tell them. Between 22-25 I was in a progressively bad state. Now I'm more or less normal.
 

Kilrogg

paid requisite penance
I like to complain about this very minor, apparently genetic disorder I have called hyperhidrosis - heavy sweating from the hands and feet, basically -, but reading your posts make me realize I whine too much and should feel lucky. Your words give me strength. I only wish I could give you guys some of that strength back.

Hang in there, everyone.
 

crpav

Member
Ulcerative Colitis checking in. Diagnosed in 2008 and dealing with it since and for life. Probably no idea how close to death I could have been trying to be diagnosed with it before a specialist finally diagnosed and treated me. Let's just say bloody diarrhea 30+ times a day at it's worst, complete loss of appetite and only able to drink water and gatorade. Coming from a guy who loves to eat it was crazy. I lost 30+ pounds in less than a month, twice, and in the hospital for long stretches multiple times that year.
 
I have fibromyalgia and Systemic Rheumatoid Arthritis which is a rare form that attacks the entire body and soft tissues.

Honestly, most days aren't even worth living.

Weed or painkillers are the only treatment options available to me since none of the drugs work and I can't take them anyway because I'm highly allergic to them.

I'm sick and bedridden most of the time or sitting on my ass at my computer. Miserable.
 
Ulcerative Colitis checking in. Diagnosed in 2008 and dealing with it since and for life. Probably no idea how close to death I could have been trying to be diagnosed with it before a specialist finally diagnosed and treated me. Let's just say bloody diarrhea 30+ times a day at it's worst, complete loss of appetite and only able to drink water and gatorade. Coming from a guy who loves to eat it was crazy. I lost 30+ pounds in less than a month, twice, and in the hospital for long stretches multiple times that year.

If you get offered the J Pouch surgery take it. 15 years on and I have had zero problems compared to the year when my bowel perforated.
 
I was diagnosed with Hashimoto's when I was 19, over a decade ago, and I made the mistake of mentioning to the endocrinologist that I was depressed, had been on antidepressants a few years ago, and that I was no longer on them (I had a really bad experience with them); and he refused to treat me unless I started taking antidepressants again. So I've never been treated for it. It's sucky, but I've never known anything else so whatever I guess.
 

Hilbert

Deep into his 30th decade
Mine isn't bad, but I have Alopecia. I grow no hair on my body. When I was a kid, I had absolutely no hair, but now I can grow some hair on my head, but it is spotty and looks terrible, and as a result I shave it off.

For you arrested development fans, that is what Sitwell had! When he was introduced on the show my roommate and I got really excited.
 

Media

Member
I have fibromyalgia and Systemic Rheumatoid Arthritis which is a rare form that attacks the entire body and soft tissues.

Honestly, most days aren't even worth living.

Weed or painkillers are the only treatment options available to me since none of the drugs work and I can't take them anyway because I'm highly allergic to them.

I'm sick and bedridden most of the time or sitting on my ass at my computer. Miserable.

Mine is systemic too :( Both of them. I hate it.
 
I like to complain about this very minor, apparently genetic disorder I have called hyperhidrosis - heavy sweating from the hands and feet, basically -, but reading your posts make me realize I whine too much and should feel lucky. Your words give me strength. I only wish I could give you guys some of that strength back.

Hang in there, everyone.

Just wanted to reach out to you because my significant other has this and while it is a minor issue, I've come to recognize how annoying it can be. Multiple times a day you shake hands or grip controllers or remotes or a computer mouse in professional and social settings and it gives people the impression you're either constantly overheated or nervous. It's massively inconvenient and I hope for both of your sakes, they eventually figure something out to cure it.
 

Media

Member
Repeating my question for folks on Humira: Am I a wuss or does that shot hurt like a motherfucker?

Also for those of you on painkillers: Vicodin helps a little with the pain, but makes me stay awake if I take it at night, and if I don't the pain keeps me awake lol. Will I get more used to the meds you think and that problem will get better?

I don't, but my sister was diagnosed with MS a few years ago and then passed away last year.

So sorry for your loss. My mom has MS and refuses to accept it, so I'm terrified this is going to be her fate as well.
 

pikablu

Member
UC here and i was just diagnosed around a year ago. Been on meds since then and nothing has seemed to work yet (in the sense that im going into remission). Atleast mine is mild. Most i will go in a day is 8 times. Usually its around 5 or 6. I just want to go into remission. It really sucks having to watch what you eat all the time. I'm on some meds now that sometimes seem to be doing ok while other times the same as my other meds. Keep me in your prayers if you believe in that sort of thing.
 

cametall

Member
I had Idiopathic Thrombocytopenia Purpura when I was 16. Its mostly a low blood platelet count and your body is destroying them thinking they are foreign. There isn't really a known cause and there is no cure. I was on prednisone for years and slowly weened off of it when my platelet counts weren't going down anymore.

You could literally tap my arm and in a little bit a small bruise would form.

I had something similar when I was five called Henoch-Schonlein Purpura. Immune system went crazy after I had a stomach virus and attacked my body. I vaguely remember being in the hospital, evidently it was very painful.

I'm disease free now but I guess it left my immune system slightly compromised.

My mom has vitiligo and my cousin (on mom's side) has some auto-immune disorder that affects her kidneys randomly.

Edit: Not sure if this is really autoimmune but I have cholinergic urticaria, basically allergic to my own sweat! I break out into hives when I sweat. They're itchy but that's about it.
 
I hope this boost isn't in poor form. I was officially diagnosed with DLE recently. I've only been on the meds a week and am currently in the middle of a stress related flare up. Scalp feels like it's on fire and it's kicking the anxiety about more lesions into high gear. Vicious ass cycle, man. Knowing that I am not alone in this is really nice. Thanks to everyone who posted in the thread.
 
I have RA, Akylosing Spondylitis, and selective IgM immunodeficiency, which there isn't any treatment for and causes me to pretty much have constant sinus and upper respiratory infections if I leave the "bubble" of my house.

Pretty much any situation involving being surrounded by a lot of people is a direct path to getting sick days later.
 
I have Crohn's disease, formally diagnosed two years ago but had I made an effort to see a doctor when I first started noticing symptoms it would've been identified much sooner.

I've already had an ileocecal resection as that section of bowel was so badly diseased it had perforated which caused a massive abscess and fistula, luckily I got away without having to have a bag, but I was such a mess inside the surgeon had to open me up instead of using a keyhole method so I've got a pretty large scar.

Currently I'm dealing with a complex perianal fistula which was laid open a month ago following six months of being treated with a loose seton. I'm pretty sure it's healing up well, but I'll find out more after an MRI in a few weeks time.

I take a 50mg tablet of Mercaptopurine every other day and can just about get away with eating whatever I like. Being diagnosed with Crohn's and having major surgery made me quit smoking as well, which is awesome.
 

GhaleonEB

Member
I have a strong autoimmune response to wheat (probably gluten). Been off it for five years, but everytime I have an accident it's pure misery for ~48 hours. My mother had a mixed connective tissue autoimmune disease that doctors could never quite diagnose, and I suspect that was it as well.
 

turmoil

Banned
Fortunately I only have Hashimoto's, after the blood test I was worried it was something serious as it is relatively uncommon in males, but a thyroid ultrasound being ok and a high antiTPO sealed it.
 

Media

Member
Glad this thread was bumped cause I want to whine.

I broke my ankle this week.
Had to go off my immunosuppressive therapy because of a lymph infection.
And now all my shit is flaring, I'm throwing up constantly, swollen all over...

Oh and I am moving, the final walk through is two days from now, I have to clean the house completely with the help of one other person and then drive to Texas from Illinois with my sister, two dogs, three cats, and a lizard.

Suffice it to say, I'm going to die.
 
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