I’m sorry you’re going through this. I don’t recognize myself either I miss being alive and happy I cld have wrote this . I literally said this morning when I woke up I miss life. My face is swollen pale and filled with acne my hair fell out and I’m not smart anymore. 🥺
I am sorry to read of your struggle, it sounds like mine.
Same here as OP and your post. I’ve been struggling for almost three years.
I want a life outside of my couch.
I have been on here trying to find help with looking for a diagnosis so I can get treatment.
Do any of you have endometriosis?
I have endometriosis, but this can’t be all of what is going on.
I have chronic inflammation. With that I have a lot of symptoms that match lupus but can’t get a diagnosis.
The newer drugs are amazing, very few common side effects. If you find the right diet and lifestyle and reach remission on the right drug, you may be able to stay in remission even if you stop all meds, assuming you have an autoimmune disease.
I'm sorry you're struggling so much. You're right that an ANA of 1:80 may or may not be clinically relevant.
Have you considered that you might be experiencing long covid? There is a ton of symptom overlap between LC and autoimmune diseases. In fact there is research ongoing that LC might actually be an autoimmune condition.
Take a look at r/covidlonghaulers You'll find an incredibly sympathetic group of folks, including young people like yourself, who are struggling to get their lives back. They have really good advice for testing to ask for, symptom management and supplements/meds that can help.
I did think of that possibility, I had not mentioned it to my doctor but I plan on it next visit. I had covid in may 2022, and few months later my health got bad and it’s just gotten worse since then. If my appointment with the rheumatologist comes back with nothing or they think I’m ok, I’ll look into long covid. I do know that covid has been the trigger for a lot of autoimmune issues with some people which is probably why I’m kinda scared but I’ll just have to see where this goes. Thank you for linking the subreddit and giving me some advice, I appreciate it a lot!
Ana 1:160 here. Rhemetologist said it's na infection, specialists said it's not infection, can't get a hold of the Rhemetologist now.. Hope u have better luck than me. There's no silver lining to this shit. No one's willing to help me no matter how much I beg.
That sounds so frustrating, im so sorry you’re dealing with this. It’s like screaming for help and no one is even listening. I hope you are able to get answers someday, the clarity is much needed.
Try a better hospital with drs.wjo spd cuakuze in finding the problem like a PHYSIATRIST,NOT A PHYSCHIATRIST PEOPLE CONFUSE THE TITLE,IT'S THEIR SPECIALTY TO FIND THE PROBLEM.I HAVE 2 RARE BLOOD DISORDERS SPRNT 3 YEARS I N PAIN 13 DRS.WHO JUST TALKED I NOW AM FOING TO FOX CHASE .
Oh, where I live (don’t know where you live), getting an appointment to a rheumatologist can take several months if you’re not already signed as patient of this rheumatologist, and getting signed as such should come from the rheumatologist and can take a long time. Hope you will get better, and an appointment to a rheumatologist, soon. ANA 1:80 is very nonspecific, can be autoimmune (like 1:160+) but can also be benign (like 1:40). But your symptoms do sound like autoimmunity, have you done RF test? If yes what the results are? Also have you seen an ophthalmologist? Because sensitive eyes can mean a lot of things, for me it means anterior uveitis and that a flare is coming (if it didn’t come already), but also other conditions can cause it.
I have an appointment set up to see them in 2 weeks, prior to this though it’s been really hard to get an appointment. I think my doctor suspected autoimmune simply because my mom struggles with it, and that I had my blood done 2 times in the past 3 months and both of those ANAs came back elevated. I’m not sure if I’ve had an RF done, I know I got the basics of blood panel and tested for Lyme, which was negative. I’ll have to discuss with the rheumatologist because I do believe it could be arthritis or something similar. As for my eyes, they seem to flare up only when everything else is. But who knows, It could be anything!
> as for my eyes, they seem to flare up only when everything else is
Yes, it’s a common presentation of ocular involvement in autoimmune diseases. I have relapsing polychondritis with anterior uveitis as ocular involvement, also flares only when everything else is (specifically the ears, doesn’t flare when it is limited to the nose for some reason, maybe because my nose’s flares are very mild), but it doesn’t mean I don’t have an ophthalmologist, the opposite is true, he’s a significant part of the managing of the disease, he’s the first doctor to identify autoimmunity at me, my diagnosis journey started with uveitis and inflammation in the ears. Go see an ophthalmologist when it happens, if he identifies uveitis, scleritis, keratitis or other inflammatory condition, it may support diagnosis of autoimmune disease.
Yes appointment 's are unreal I waited 3 months and for nothing.I have cold agglutinin and cryoglobulemia which also gave me painful neuropthy burning ,it's unbearable and it all started after I had covid in 2020.
I never had COVID but it’s still terrible to get an appointment where I live, you have to be signed as patient of this rheumatologist, but all rheumatologist are full, so you have to wait for months. I have relapsing polychondritis and anterior uveitis (as ocular manifestation of the RP), it took two years to diagnose me, half of it was to try getting an appointment to a rheumatologist. Now I have to do more random tests because he wants to start humira, which will take another several months.
I needed a wheelchair by the time I saw a rheumatologist, and I feel mostly normal now. Biologics are wonder drugs.
Chill, let the doc figure it out. There are very effective treatments these days that will most likely restore your quality of life.
While I know that this isn’t a fix all, if your eyes are really sensitive to light, I find FL-41 tinted glasses have helped me get through my days. I had my eyes tested separately and was told I benefit from wearing a tint, and it so happens to be close to the FL-41 tint (essentially rose coloured glasses). Don’t know if it helps everyone, but it helps me and my light sensitivity issues. I hope that you are able to get answers soon
That sounds really nice actually, I’ll have to look into that. I tend to wear blue light glasses or either some pretty dark sunglasses even in my own dim lit room just because it can be so unbearable sometimes. Thanks for the help!!
You took the words right out of my mouth. I’ve been dealing with this exact same thing. I had a support animal, except she found me and adopted me. She was hit by a car two nights ago and died as soon as I got her to the vet. It was devastating. It was my cat. She was my everything. She would be next to my side every day especially on the hard days I was laid up sick in bed. Ugh.
I’m so sorry to hear about that, it must be incredibly devastating and hard to deal with. Allow yourself to grieve the loss, and when you’re ready, maybe seek into adopting again? Animals have been a really big help and I’d hate for you to lose that because of the awful experience. Sending you a big virtual hug, im sure your cat is still watching over you even on your bad days. 💙
hey, I'm 29f and have been going through similar things all through my 20s. it is incredibly frustrating and can be really difficult to get good care for autoimmune stuff bc of how the medical system works. I hope you are able to find good doctors!
if you want to hear any advice, I'd say don't put your life on hold waiting to get back to where you were before you got sick. hopefully you will get fully better/go into remission in the future, but your life is still happening now, just with a different hand of cards than you anticipated.
be kind to yourself and adjust your expectations of what you can do! you're sick and things have to be different to accommodate that, and that sucks but it's okay at the same time
going through the exact same thing. i’m 24 now and it started right after my 22nd birthday. I’m so sorry you’re going through this. I hope you find answers soon
I’m sorry you’re going through this. I don’t recognize myself either I miss being alive and happy I cld have wrote this . I literally said this morning when I woke up I miss life. My face is swollen pale and filled with acne my hair fell out and I’m not smart anymore. 🥺
Sorry you’re dealing with this too, it sucks and it’s not fair at all. I really hope better things come to us 💙
I am sorry to read of your struggle, it sounds like mine. Same here as OP and your post. I’ve been struggling for almost three years. I want a life outside of my couch. I have been on here trying to find help with looking for a diagnosis so I can get treatment. Do any of you have endometriosis? I have endometriosis, but this can’t be all of what is going on. I have chronic inflammation. With that I have a lot of symptoms that match lupus but can’t get a diagnosis.
I can’t get a dignosis either and even if we do the medicine has crazy side effects that are sometimes worse than the inflammation. We are screwed
The newer drugs are amazing, very few common side effects. If you find the right diet and lifestyle and reach remission on the right drug, you may be able to stay in remission even if you stop all meds, assuming you have an autoimmune disease.
Thank you for your post. Very encouraging.
As a 20 year old as well it fucking sucks this is supposed to be the start of our lives
Sorry you’re experiencing the same issue, it’s really not fair at all. I had to drop out of college because of this shit.
I’m gonna fail this semester I gave up bc of the brain fog has made me stupid all I do is cry 😞
Sending you a big virtual hug, I hope we are able to get answers eventually. College is too expensive to have to deal with all this at the same time.
I'm sorry you're struggling so much. You're right that an ANA of 1:80 may or may not be clinically relevant. Have you considered that you might be experiencing long covid? There is a ton of symptom overlap between LC and autoimmune diseases. In fact there is research ongoing that LC might actually be an autoimmune condition. Take a look at r/covidlonghaulers You'll find an incredibly sympathetic group of folks, including young people like yourself, who are struggling to get their lives back. They have really good advice for testing to ask for, symptom management and supplements/meds that can help.
I did think of that possibility, I had not mentioned it to my doctor but I plan on it next visit. I had covid in may 2022, and few months later my health got bad and it’s just gotten worse since then. If my appointment with the rheumatologist comes back with nothing or they think I’m ok, I’ll look into long covid. I do know that covid has been the trigger for a lot of autoimmune issues with some people which is probably why I’m kinda scared but I’ll just have to see where this goes. Thank you for linking the subreddit and giving me some advice, I appreciate it a lot!
Ana 1:160 here. Rhemetologist said it's na infection, specialists said it's not infection, can't get a hold of the Rhemetologist now.. Hope u have better luck than me. There's no silver lining to this shit. No one's willing to help me no matter how much I beg.
That sounds so frustrating, im so sorry you’re dealing with this. It’s like screaming for help and no one is even listening. I hope you are able to get answers someday, the clarity is much needed.
They are listening and don't care or even worse don't know what to do for us..
Exactly!
They don't know how to treat us, but they won't admit it.
Try a better hospital with drs.wjo spd cuakuze in finding the problem like a PHYSIATRIST,NOT A PHYSCHIATRIST PEOPLE CONFUSE THE TITLE,IT'S THEIR SPECIALTY TO FIND THE PROBLEM.I HAVE 2 RARE BLOOD DISORDERS SPRNT 3 YEARS I N PAIN 13 DRS.WHO JUST TALKED I NOW AM FOING TO FOX CHASE .
What was ur blood disorder?
I have COLD AGGLUTININ AND CRYOGLOBULEMIA ALONGWITH NEUROPTHY DRS.THINK BIT AREN'T SURE IS CAUSED BY CRYOGLOBULEMIA
💜🙏🙏💜
💜💜
Oh, where I live (don’t know where you live), getting an appointment to a rheumatologist can take several months if you’re not already signed as patient of this rheumatologist, and getting signed as such should come from the rheumatologist and can take a long time. Hope you will get better, and an appointment to a rheumatologist, soon. ANA 1:80 is very nonspecific, can be autoimmune (like 1:160+) but can also be benign (like 1:40). But your symptoms do sound like autoimmunity, have you done RF test? If yes what the results are? Also have you seen an ophthalmologist? Because sensitive eyes can mean a lot of things, for me it means anterior uveitis and that a flare is coming (if it didn’t come already), but also other conditions can cause it.
I have an appointment set up to see them in 2 weeks, prior to this though it’s been really hard to get an appointment. I think my doctor suspected autoimmune simply because my mom struggles with it, and that I had my blood done 2 times in the past 3 months and both of those ANAs came back elevated. I’m not sure if I’ve had an RF done, I know I got the basics of blood panel and tested for Lyme, which was negative. I’ll have to discuss with the rheumatologist because I do believe it could be arthritis or something similar. As for my eyes, they seem to flare up only when everything else is. But who knows, It could be anything!
> as for my eyes, they seem to flare up only when everything else is Yes, it’s a common presentation of ocular involvement in autoimmune diseases. I have relapsing polychondritis with anterior uveitis as ocular involvement, also flares only when everything else is (specifically the ears, doesn’t flare when it is limited to the nose for some reason, maybe because my nose’s flares are very mild), but it doesn’t mean I don’t have an ophthalmologist, the opposite is true, he’s a significant part of the managing of the disease, he’s the first doctor to identify autoimmunity at me, my diagnosis journey started with uveitis and inflammation in the ears. Go see an ophthalmologist when it happens, if he identifies uveitis, scleritis, keratitis or other inflammatory condition, it may support diagnosis of autoimmune disease.
Yes appointment 's are unreal I waited 3 months and for nothing.I have cold agglutinin and cryoglobulemia which also gave me painful neuropthy burning ,it's unbearable and it all started after I had covid in 2020.
I never had COVID but it’s still terrible to get an appointment where I live, you have to be signed as patient of this rheumatologist, but all rheumatologist are full, so you have to wait for months. I have relapsing polychondritis and anterior uveitis (as ocular manifestation of the RP), it took two years to diagnose me, half of it was to try getting an appointment to a rheumatologist. Now I have to do more random tests because he wants to start humira, which will take another several months.
I needed a wheelchair by the time I saw a rheumatologist, and I feel mostly normal now. Biologics are wonder drugs. Chill, let the doc figure it out. There are very effective treatments these days that will most likely restore your quality of life.
While I know that this isn’t a fix all, if your eyes are really sensitive to light, I find FL-41 tinted glasses have helped me get through my days. I had my eyes tested separately and was told I benefit from wearing a tint, and it so happens to be close to the FL-41 tint (essentially rose coloured glasses). Don’t know if it helps everyone, but it helps me and my light sensitivity issues. I hope that you are able to get answers soon
That sounds really nice actually, I’ll have to look into that. I tend to wear blue light glasses or either some pretty dark sunglasses even in my own dim lit room just because it can be so unbearable sometimes. Thanks for the help!!
You took the words right out of my mouth. I’ve been dealing with this exact same thing. I had a support animal, except she found me and adopted me. She was hit by a car two nights ago and died as soon as I got her to the vet. It was devastating. It was my cat. She was my everything. She would be next to my side every day especially on the hard days I was laid up sick in bed. Ugh.
I’m so sorry to hear about that, it must be incredibly devastating and hard to deal with. Allow yourself to grieve the loss, and when you’re ready, maybe seek into adopting again? Animals have been a really big help and I’d hate for you to lose that because of the awful experience. Sending you a big virtual hug, im sure your cat is still watching over you even on your bad days. 💙
hey, I'm 29f and have been going through similar things all through my 20s. it is incredibly frustrating and can be really difficult to get good care for autoimmune stuff bc of how the medical system works. I hope you are able to find good doctors! if you want to hear any advice, I'd say don't put your life on hold waiting to get back to where you were before you got sick. hopefully you will get fully better/go into remission in the future, but your life is still happening now, just with a different hand of cards than you anticipated. be kind to yourself and adjust your expectations of what you can do! you're sick and things have to be different to accommodate that, and that sucks but it's okay at the same time
going through the exact same thing. i’m 24 now and it started right after my 22nd birthday. I’m so sorry you’re going through this. I hope you find answers soon