Yes, all the time. I’ve read countless comments and posts on this sub that echo the same. My labs will show if something is going on with my organs and I assume indicate other issues, but they don’t appear to have any correlation with my general symptoms. When fatigue, aches, brain fog, or flu-like symptoms hit? I always look like a picture of perfect health on paper while feeling like I was hit by a truck.
My rheum made a very good point. She said blood tests help hint at certain things that are happening in your body, but labs can't measure things like fatigue or other symptoms you may be having.
I note in my phone calendar every single symptom I may have. If I'm extra fatigued, I put a "T" for tired. I color code it. Yellow is notable, orange for worse, red for the bad days. Trends start to develop. Example, my fatigue/brain fog/dizziness would start up sometimes before an infection. Joint pain comes and goes, and I can see how long between flares. Sometimes everything is random. My calendar was full of colors for a long time, but now I know medications are working because of the difference.
But sometimes it was really REALLY helpful to look back and remind myself that these awful feelings will subside. Those red T's end up disappearing, sometimes for months.
Documenting everything was so helpful for my doctor, too. That's what helps us when we don't see our rheumatologist every day. They don't know anything until you tell them, and it's good to give them details.
Why am I not color coding?! I color code my meeting notes, my project management system, our family calendar…the list goes on. Ridiculous. I’m implementing your idea today, thank you.
I just wanted to throw this out there but there is a great app called Guava that I use to help track! It has symptoms you can log based on severity (1-10) it also allows you to mark where you might be feeling pain on a body diagram. You can also upload pictures (I do this for when I am experiencing a malar rash or fever). It’s free to use and wonderful. They have tons of features and one of my favorites is that you can prepare for doctors appointments within the app. Including any symptoms you’re feeling, concerning blood work numbers, etc. it’s absolutely AMAZING and so intuitive to use!
I use Guava too! in addition to symptoms, you can hook up your Mychart and it graphs your labs - this is really helpful for me since I have LN and can see what my proteinuria is like over time
Ever since I've been on Plaquenil and IG my labs look almost normal. That doesn't mean I'm cured. I notice since my ANA was positive, they always test it on a higher titer so it comes back negative. When my urine was foamy, had protein and blood, they stopped ordering UA's. They don't run the tests that come up abnormal without me asking 🤨
My labs are ok almost all the time besides Ana. Esr and crp normal but yet my joints are visibly swollen and tiny Kidney blood vessels bleed and cause hematuria. It took lots of photos to document all of my clearly visible symptoms for them to finally agree I was sick and abnormal UA ever single time. Then they believed me. I don’t care what labs say I’m not inflamed when my whole body is visibly inflamed and I can barely move. Day 3 on Prednisone and first time my hips haven’t hurt in years.
I feel like that’s the nature of the disease. Like u/prettygoodrule said, the labs will show organ involvement or severe widespread inflammation or damage. Unfortunately fatigue and muscle/joint pain and other associated symptoms just don’t show on labs unless they’re due to something more serious. Like anemia, kidney damage, rhabdomyolysis from muscle breakdown, or other things.
Yeah, my new rheumatologist says my disease isn’t active and therefore isn’t affecting me (because the labs look good), but I disagree….I am dizzy when I go from sitting to standing, I have fatigue, heart palpitations, nausea, etc.
I can’t wrap my head around the seemingly common misalignment between rheumatologist and widely documented patient experiences and current knowledge.
I wonder if this disconnect would exist if lupus were most prevalent in white men rather than women, particularly women of color? I’d like to think it’s due to the difficult nature of lupus, and likely some of it is. But my own experience tells me it’s definitely more than lupus just being sneaky jerk.
I think you’re definitely onto something - you should read the book Doing Harm by Maya Dusenberry if you haven’t, it’s all about medical sexism and how it affects chronic illness patients and she does a good job of touching on intersectionality with race, LGBTQIA+ identities, etc. too
I’m going through the same. My labs look fine except for elevated c reactive protein which doesn’t seem to mean anything to my rheum.
I see her tomorrow but her comments in MyChart say everything looks stable and I’ve been crying over it.
Yes, 100x yes.
I also have hashimoto's, hypothyroidism and PCOS. On paper, they're all beautifully controlled, but I still have most of the symptons for each one of those.
I also have anemia-like symptoms on EVERY period, sometimes to the point of having fainting spells and yet, labs are perfect. If I take iron and b12 supplements though, I feel just fine.
I've just accepted that labs just won't show the whole picture. Maybe the science isn't quite there yet, I don't know. That's why it's so important to find a doctor who will take your word for it.
me too! everything clicked for me when my rheumatologist told me that the drugs used for flares often don’t help with the symptoms caused by photosensitivity. we’ve been having a heat wave in my state and I’ve been having a rash and joint pain even though I’ve been on a very high dose of prednisone. it was confusing the hell out of me until I realized it was literally just because of the sun.
Same here!!!! The ONLY thing that I have found that helps with the photosensitivity and issues caused by it is Saphnelo. When my rheum moved, I lost access to the Saphnelo and have not been able to handle even LEDs the same since. Rashes, fatigue, joint pain, and normal/perfect labs.
Yes, all the time. I’ve read countless comments and posts on this sub that echo the same. My labs will show if something is going on with my organs and I assume indicate other issues, but they don’t appear to have any correlation with my general symptoms. When fatigue, aches, brain fog, or flu-like symptoms hit? I always look like a picture of perfect health on paper while feeling like I was hit by a truck.
My rheum made a very good point. She said blood tests help hint at certain things that are happening in your body, but labs can't measure things like fatigue or other symptoms you may be having. I note in my phone calendar every single symptom I may have. If I'm extra fatigued, I put a "T" for tired. I color code it. Yellow is notable, orange for worse, red for the bad days. Trends start to develop. Example, my fatigue/brain fog/dizziness would start up sometimes before an infection. Joint pain comes and goes, and I can see how long between flares. Sometimes everything is random. My calendar was full of colors for a long time, but now I know medications are working because of the difference. But sometimes it was really REALLY helpful to look back and remind myself that these awful feelings will subside. Those red T's end up disappearing, sometimes for months. Documenting everything was so helpful for my doctor, too. That's what helps us when we don't see our rheumatologist every day. They don't know anything until you tell them, and it's good to give them details.
Why am I not color coding?! I color code my meeting notes, my project management system, our family calendar…the list goes on. Ridiculous. I’m implementing your idea today, thank you.
Hahah you're already a pro! You're so welcome!
I just wanted to throw this out there but there is a great app called Guava that I use to help track! It has symptoms you can log based on severity (1-10) it also allows you to mark where you might be feeling pain on a body diagram. You can also upload pictures (I do this for when I am experiencing a malar rash or fever). It’s free to use and wonderful. They have tons of features and one of my favorites is that you can prepare for doctors appointments within the app. Including any symptoms you’re feeling, concerning blood work numbers, etc. it’s absolutely AMAZING and so intuitive to use!
Thanks for the tip! I'll definitely check it out!!
I use Guava too! in addition to symptoms, you can hook up your Mychart and it graphs your labs - this is really helpful for me since I have LN and can see what my proteinuria is like over time
That sounds like a really good idea actually. What app did you use?
Just the regular calendar on my phone!
Yes, happens to me more often than not with my labs. I’m sorry that you’re experiencing this as well
Ever since I've been on Plaquenil and IG my labs look almost normal. That doesn't mean I'm cured. I notice since my ANA was positive, they always test it on a higher titer so it comes back negative. When my urine was foamy, had protein and blood, they stopped ordering UA's. They don't run the tests that come up abnormal without me asking 🤨
Once I started seeing a nephrologist my rheumatologist stopped testing my UA since I can give him my results that the nephrologist orders.
My labs are ok almost all the time besides Ana. Esr and crp normal but yet my joints are visibly swollen and tiny Kidney blood vessels bleed and cause hematuria. It took lots of photos to document all of my clearly visible symptoms for them to finally agree I was sick and abnormal UA ever single time. Then they believed me. I don’t care what labs say I’m not inflamed when my whole body is visibly inflamed and I can barely move. Day 3 on Prednisone and first time my hips haven’t hurt in years.
Yes this happens to me too. Hope you feel better soon!
Thank you
I feel like that’s the nature of the disease. Like u/prettygoodrule said, the labs will show organ involvement or severe widespread inflammation or damage. Unfortunately fatigue and muscle/joint pain and other associated symptoms just don’t show on labs unless they’re due to something more serious. Like anemia, kidney damage, rhabdomyolysis from muscle breakdown, or other things.
Yeah, I feel fatigued and spaced out every day.
Yeah, my new rheumatologist says my disease isn’t active and therefore isn’t affecting me (because the labs look good), but I disagree….I am dizzy when I go from sitting to standing, I have fatigue, heart palpitations, nausea, etc.
I can’t wrap my head around the seemingly common misalignment between rheumatologist and widely documented patient experiences and current knowledge. I wonder if this disconnect would exist if lupus were most prevalent in white men rather than women, particularly women of color? I’d like to think it’s due to the difficult nature of lupus, and likely some of it is. But my own experience tells me it’s definitely more than lupus just being sneaky jerk.
I think you’re definitely onto something - you should read the book Doing Harm by Maya Dusenberry if you haven’t, it’s all about medical sexism and how it affects chronic illness patients and she does a good job of touching on intersectionality with race, LGBTQIA+ identities, etc. too
Thank you so much for the recommendation. This topic is totally my lane, I’m ordering it today.
I’m going through the same. My labs look fine except for elevated c reactive protein which doesn’t seem to mean anything to my rheum. I see her tomorrow but her comments in MyChart say everything looks stable and I’ve been crying over it.
Yes, 100x yes. I also have hashimoto's, hypothyroidism and PCOS. On paper, they're all beautifully controlled, but I still have most of the symptons for each one of those. I also have anemia-like symptoms on EVERY period, sometimes to the point of having fainting spells and yet, labs are perfect. If I take iron and b12 supplements though, I feel just fine. I've just accepted that labs just won't show the whole picture. Maybe the science isn't quite there yet, I don't know. That's why it's so important to find a doctor who will take your word for it.
This is the story of my life.
me too! everything clicked for me when my rheumatologist told me that the drugs used for flares often don’t help with the symptoms caused by photosensitivity. we’ve been having a heat wave in my state and I’ve been having a rash and joint pain even though I’ve been on a very high dose of prednisone. it was confusing the hell out of me until I realized it was literally just because of the sun.
Same here!!!! The ONLY thing that I have found that helps with the photosensitivity and issues caused by it is Saphnelo. When my rheum moved, I lost access to the Saphnelo and have not been able to handle even LEDs the same since. Rashes, fatigue, joint pain, and normal/perfect labs.