I've been mainly doing my own research ... been dealing with symptoms for years, but I guess I didn't really tell my doctor how much it was affecting me and seems like whenever I mentioned the extreme fatigue, it was always chalked up to "well, it's called being a mom" ... I have 3 young kids.
So as of now, I don't have any kind of diagnosis.
I just re-did one of my tests, and I have an appointment next week I think with my regular doctor. But I think this last week was kind of a major flare up; I kept track daily of symptoms and will take that with my to my appointment so hopefully that will help.
But what I'm reading in my research is also pointing towards Sjogren's, which I read is a much more advanced stage of lupus. I find myself occasionally coughing, like a little bit here and there just like a quick cough to kind of catch my breath ... so I'm also worried it's affecting my lungs. And I'm freaking out!!! I don't even know what I have, but I'm worried that it's too late. Some of the stuff you read on lupus is really, really scary! I'm sorry I don't really have a question, I'm just kind of venting to get it out. Driving home the other day it hit me, as my vision started to get so blurry I couldn't read the license plates on the cars around me ... what if this is a lot more serious that I thought??
thanks for listening
Sjorgen's is not a 'more advanced' type of lupus- it is a separate autoimmune problem generally considered to be less severe than systemic lupus. With the AI diseases there can be a lot of overlap to boot making it difficult to put an absolute label on your diagnosis You have to be careful with self diagnosis and causing yourself more anxiety These are chronic diseases with fairly normal lifespans with treatment so certainly not the dire emergency and panic that say a stage 4 cancer diagnosis would bring. And of course the daily stresses of everyday life only add - it is VERY tiring to have young children even if you do not have an illness- some truth to that statement for sure.
The vision could be nothing more than age related vision changes. Have you had a routine vision check?
You better get this checked out! It sounds very serious and you are unwise to ignore these symptoms, which could worsen given time. Give the details to your doctor and let them make a diagnosis, but do not wait any longer!
Well its never to late with lupus i have learned that there will always be other complications due to meds or your immune system
Sjogrens is not an advanced stage to lupus. Sjogren’s is a separate illness, some people without lupus have sjogren’s.
Sometimes you can read too much. Find a dr you love and tell him EVERYTHING you are feeling. I'm a MOM of 4 and I have always worked and the fatigue is not the same. I should mention my children are all grown, heck I have grown grandchildren.
Mine is more like weak than fatigue. Blurry vision?? get to an Opthamologist.
Diagnosing yourself is really dangerous and can make you think you are sicker than you are or have you focusing on the wrong symptoms. It can cause you needless anxiety.
Prepare a list of your worst symptoms when you go to the doctor so you don’t go off track (which can end up leading the doctor down the wrong track). Just because you may not be experiencing it that day, it still needs to be reported. If your fatigue is more than normal mom with kids fatigue, tell your doctor that. Blurry vision is serious. Coughing and shortness of breath is serious. Pain is serious.
Discuss your symptoms and let your doctor make a diagnose and develop a treatment plan. If you feel like your doctor isn’t listening, find another one.
It's very easy to feel things are way worse than they really are when you are tired and not feeling well. Until you see your doctor, I suggest you stop doing your own researching. Especially reading blogs. If you feel you must continue, go to medical sites, not the discussion rooms. I have lupus and sjorgrens. Sjorgrens is just a nuisance for me. dry eyes, chapped lips, and sore gums. Not everyone with lupus gets sjorgrens, just as not everyone with sjorgrens gets lupus. And, your coughing is very similar to what I just had looked at. I felt like I couldn't get enough air in my lungs and I'd have a dry cough, that I felt I only needed to do once in a while. Turns out it was just "twitchy airways"...basically an irritant causing my airways to act goofy. Not a dangerous thing at all! And if I get uncomfortable, I have an inhaler, but I never need it.
Just set up some appts and let the doctors run a few tests. Feel better soon sweetie.
thank you everyone :)
I did actually just have an eye exam. He told me that my eyes are the driest he's seen "in ages", and he's been practicing for over 30 years. I feel pretty good with my eye doctor; he actually treats a lot of patients with lupus and I did tell him I'm being tested. We've tried about 4 different drops/ointments now as well as increasing my fish oil, but so far it's not really helping. He does think the increase in blurred vision is due to the dry eyes, though the cause of the dry eyes isn't really known yet.
Sometimes the internet can be my own worst enemy. Time to take a break from the research, perhaps :)
My eyes are like that too. My eye doctor wants to put plugs in my tear ducts. I haven't had the nerve to do it yet, but you might ask your doctor about them.
Use the drops a lot, not just a couple times a day. My eye doctor says dry eyes can change my eyesight, too.
I agree, stop doing so much research, sometimes you can freak yourself out. I would also suggest that a lupus flare doesn’t last for a week, it’s long term and getting over it usually requires medical intervention. Keeping track of your symptoms isn’t a bad idea at all!
Oh, and Sjogren’s is not advanced lupus, it’s separate from lupus, though many of us have both, and they have many similarities.
kaycie - thanks! :) My next appointment is the 5th, so hopefully some kind of answers by then.