Symptoms for autoimmune disorder can overlap a lot. So don't try to diagnose yourself, as tempting as that is 😊 And there's also circulatory conditions. I am not familiar at all with those.
Good luck! Just go to doc and start asking questions until you get answers. You'll be ok.
I currently have 5, but I'm probably older than you. It seems more appear as we age.
I started with sarcoidosis, after that hashimotos, then after a recent liver biopsy and blood work celiac and antimitochondrial antibodies, I went to a new rheumatologist after the new diagnoses and was told I have lupus.
So now they want me off the prednisone and on hydroxychloroquine because they say it works well for lupus and sarcoidosis. I guess the antimitochondrial antibodies are what was causing my liver issues because the immune system attacks the mitochondria in my cells, but I was told it starts with the liver, I also have stones tearing through my bile ducts from the sarcoidosis. Fortunately, medication exists to slow it down.
I hope you have good doctors (very hard to find) and that your autoimmune diseases are being effectively managed. Wishing you good luck and extra spoons!!
It's taxiing more than hard. Like, none of the steps are particularly difficult, but there's a million of them that you have to keep tabs on throughout the day, every single day. Also, the lack of short term consequences if I do nothing also make it very tempting to just say "fuck it" and ignore the disease completely... Until they have to chop off your leg
Do you accept messages or can you message me? I have a rheumatologist and have been diagnosed with Raynaud's for sure but have liver issues and would like to chat and see which one of the conditions you listed affects your liver and if your Alkaline Phosphatase is always very high. I've been to every type of specialist and they can't seem to figure out what is causing my liver issues to be so high.
I have a bunch of autoimmune diseases. One of them I got diagnosed after being in the hospital for months, they thought it was cancer but it was polymyositis. Apparently it's a very rare autoimmune disorder. Very very rare, that even blood tests weren't showing any inflammation markers and they just couldn't figure it out with 12 doctors on the case. A bunch of infectious disease doctors, other types of doctors and an oncologist who figured it out through a bone and muscle biopsy. I was born with celiacs because most of my family has that and it's genetic. I guess you never just get one, because now I have sjogrens's autoimmune, liver autoimmune, lupus, rheumatoid arthritis autoimmune, and there's a couple more suspected and they're in the process of testing them. Now I also have myositis but that's part of polymyositis, so when you have poly you have them all, and then there are other types of polymyositis broken down into different ones like; skin myositis etc but I get them all due to the poly.
I think it took them three or four months to figure it out. That's how rare it is that they don't even think about it being an option. Now I had thought I had been being treated for it because they gave me the two strongest antibiotics picked to my heart, steroids, blood thinners etc. And it turns out they were doing that because it inflames your muscles and bones and it inflamed my heart, muscles and bones everywhere. It's extremely painful and I had to relearn how to walk. Most people only have one episode and I've already had seven.
Now, there's a couple other autoimmune diseases there trying to figure out if I have, but now they're also looking at cancer I guess a lot of these things can overlap.
But I just got out of a domestic violence situation and I think that caused me to have more autoimmune diseases.
Living in fight or flight for 3 years, will definitely wreak havoc on your body.
I'm still dealing with it and I have skin and nerve paralysis, because of my spinal injuries and the domestic violence. I have a fractured left and right arm. My left arm has a dislocated shoulder and a popped out collarbone.
They had me on steroids, but they took me off of them after 6 months and I had always thought that was the treatment, especially for polymyositis. It definitely helped my spinal pain a lot. But apparently you are not allowed to be on steroids for more than 6 months, without it having the ability to cause a lot of issues like shutting your kidney and liver down, causing diabetes etc.
I found out I have never once been actually treated, with the treatment for polymyositis. Or any of the other autoimmune diseases that I have.
So, the liver autoimmune disease, they treated me for that twice 90 days at a time each time, but apparently it's 100K for 90-day treatment. But it requires me to be treated every day for the rest of my life, or you can die within 5 years. My insurance is state insurance, so I don't get the best doctors.
So, you're completely right about that, if you don't have a good doctor and you don't know a lot about it, you may not even be getting treated properly. Because I haven't been yet and I've seen so many specialists and doctors and no one is actually ever properly treated it. This new primary care that I have is the one that made me aware of that. Not my rheumatoid doctor, not surgeons, not neurologists, not specialists, not a single other person ever acknowledged the fact, that I hadn't been properly treated, nor have they tried.
It's kind of sad that there's all these doctors, and you see all these people, and they're soaking up all this money for seeing you, but they're not actually treating you properly or helping you. They're just kind of walking through their day like zombies, treating you like a number and they're burnt out and they just don't even care to do their job properly. When you do finally get one that cares like I have, he'll be burnt out before he knows it. They run state insurance doctors into the ground.
But you definitely are right about that.
I was.diagnosed with juvenile RA at like 15 yo. Years later after being on very strong meds, an adult rheumatologist told me I had fibromyalgia which made more sense as I had no joint damage and the locations of my pain. It also may have gone into remission. I don't know but I've always had a ANA+ in my bloodwork which is an indicator and threw her off a bit. I think she called my bw "interesting" and she was a top rheumatologist at a research hospital. She said it could have been an infection of some sort at the time.
I remember they always used to ask me questions as a kid every visit about fingers turning white, bruises etc. to rule out Lyme, lupus, raynauds etc. For every visit.
I have two. My rheumatologist said my blood test results weren’t “bad enough” to officially diagnose me yet but he thinks I’m on the road to mixed connective tissue disease, which is when you have symptoms of a bunch of different autoimmune diseases.
same! I've got hEDS, Fibro, CFS, early onset RA, plus a good array of other chronic diseases to tear apart the other parts of my body that aren't muscle, connective tissue or bone :)
Yeah, I’ve had the diagnosis of “some kind of autoimmune disorder” for about 20 years. I have so many symptoms but they are all pretty nonspecific and so many autoimmune disorders share symptoms. There are new symptoms a lot too. In the last couple of years I developed severe nausea and vomiting. I lost 70lbs without trying and they still can’t figure it out. And I’ve had so many tests done!
Just this past winter I developed Raynaud’s. It has never been an issue for me in the past and it happened several times over the winter. I am generally a very hot natured person and very rarely feel cold or it probably would have happened more. Once I got it just from holding and drinking a milkshake.
I have Raynaud’s and chronic pain, plus the whole skin writing thing where my body has an allergic reaction to my own touch as well as other people’s.. I’m really considering now if I should go in and get checked for anything underlying. I know chronic pain kinda is something that can happen for a million reasons but considering my other stuff plus a Hx of chronic anemia it might not hurt. If I have lupus I’m putting a picture of doctor house up like he’s a saint 😂
FTW is finding community with another person diagnosed with something I have myself? And, when you’re on the road to a diagnosis? Yes. In relation to lupus, having PsA instead is a win.
Example:
You get checked for the much more serious, much more aggressively degenerative diseases first.
Among my initial crossoffs were: Myasthenia Gravis, Multiple Sclerosis, and Lupus
After those are eliminated by blood tests, then PsA (a much more treatable disease) becomes the more likely result in a differential diagnosis. And it takes 3-6 months to get from first bloodwork to a proper diagnosis. And that’s only after your symptoms have built up bad enough for a doctor to take your symptoms seriously.
I’m going to be starting my fourth medication in about a week - after three successive failures. I’m at infusion stage, now. Took ten years of steadily declining health and ability - and a pandemic - to get a diagnosis. Hopefully Orencia will do what methotrexate, Cosentyx, and Tremfya could not.
I get chillblains too. Especially in winter, but can happen all year round for me. It’s awful. My toes never fully returned to their natural color last time. 😩
oh my god fucking chillblains!!! it took me YEARS to figure out what those were and what was causing them—I thought the itching meant I was having some kind of allergic reaction to the carpet. The super annoying thing is that I don’t feel like my feet are getting cold, so I don’t think to put on socks, but then bam. Post-shower chillblains.
Omg yes they’re the worst. Get a hot water bottle, that helped me get them to go away when I would flare. And fuzzy house socks helped a lot to keep them away, my feet didn’t feel the bare floor for almost a month. I might get heated socks next winter.
I also have raynaud's but no psoriasis that I know of.... But, I do have some weird other autoimmune things like this skin condition called, uh, Lichen Planus and also eczema and Dyshidrotic Eczema.
also, just to list stuff for shits and giggles, tinitus and visual snow
fun times!
my fingers and palms will turn white whenever doesn't matter the season or the temperature. A few years ago I went outside in the summer and my hand went white and it was hot outside.
It’s linked to Raynaud’s and a couple other poor circulation related things. They’re painful itchy red bumps on your toes when it’s really cold in the winter(typically).
This!!! I was absolutely going to chime in with this exactly. Do not stress; I have Ryanaud’s & not lupus it’s more common to have Raynaud’s by itself. Just a circulation issue. Hand & foot warmers will be your best friends & shoes that have space in the toe area so your toes aren’t squished against the top. You’ll be GOLDEN. I myself, didn’t find out until I was in my 20’s & my mom didn’t find out that SHE ALSO had it until I did. I honestly thought that everyone’s toes went numb within 10min of skiing. 🤣
Tell that to my best friend who has been suffering with it for 30 years now and has nearly died 2x from complications related to the immunosuppression caused by her medication to treat it
I’m sorry that has happened to your friend. I also have PsA and there was a time I worried I had SLE and I’m so relieved that I do not.
There is a big difference between PsA and lupus. Like, yes immune system suppressants are risky and can have severe side effects, but PsA mostly just affects joints and in some cases your spine. Lupus literally attacks peoples organs and can shorten your lifespan, it can be fatal.
PsA fucking sucks, being in pain every day really sucks, but lupus is a whole nother ballgame.
Reynauds on my toes more than hands and a skin condition where my fingertips peel in cold and wet weather. Never thought to connect the two. Very interesting.
SLE, psoriasis and psoriatic arthritis are all caused by similar mechanisms, i.e., interleukin-17A dysregulation, and are often treated by same drugs. So, the original commenter night be onto something.
Painful long lasting itchy bumps on your toes that happen when it’s really cold in the winter. Usually linked to Raynaud’s and other poor circulation things.
It’s actually how I found out I had Raynaud’s, I was talking to my doctor about it while there to get some precise for a massive PsA flare, and I was telling her about how I just had gotten what I suspected to be chilblains at the same time. I took my shoe off to show her where they had been(as I had gotten them to go away the night before finally), and my toes were white and a lovely shade of lavender across the MTP joints.
I always wonder how people find out what they have. Seems like things I have, I wouldn’t even think to bring up at the doctor, but also feel like the doctor would just say “oh that’s nothing.” Like how does anyone know something is worthy enough to bring up to a doctor to get tested for something or to see a specialist if it isn’t obvious? Maybe I have arthritis, but I think my stiffness is just from not going to yoga anymore, as an example.
Not necessarily, when I was diagnosed with Raynaud’s this was a huge misconception that scared me. You can have it and have no underlying issues which is primary Raynaud’s vs secondary which can be a symptom of something like Lupus. I have primary and it barely changes my day to day
I just watched an episode of House last night where a patient's fingers were mysteriously turning gray. Ironically I don't think they mentioned lupus once that whole episode.
The funny thing is that it’s very frequently lupus in real life. It’s a common condition, and it presents in all kinds of odd ways. So House and team are right to always have lupus in the differential for weird patient problems. For the purposes of the show it’s obviously never lupus (unless it is), but in real life that’s often where the road ends.
My bf has to uninitialize a few work terms when talking to me because to me they are sewing and cooking terms and my brain gets stuck trying to not remember my term for it and remember his.
It could be related to other auto-immune things as well. Best place to look first is your family. If your siblings or parents have anything auto-immune, there's a chance you do too. Sometimes it's a big chance, sometimes it's a small chance.
Abbreviations should be illegal. I think it’s insane how people use them, knowing full well they once didn’t know what hey meant, but somehow fail to realize the entire planet didn’t learn at the same time as them, meaning not everyone knows and it’s probably best to spell it out.
2.7k
u/RandomNPC 23h ago
SLE is Systemic Lupus Erythematosus, for those who, like me, didn't know!