ESR measures the amount of inflamation in your body, the higher the number the lousier you'll feel. Mine has been steady around 45-50 nothing seems to make it better or worse, it's just lupus. Hope this helps a little.
Unfortunately sometimes our blood work doesn’t necessarily translate to how bad we feel … Tests like"sed rate" and “crp” are helpful to our doctor’s in order to treat/medicate us properly. When I was hospitalized a couple months ago with a horrendous flare my sed rate was close to 70, crp was through the roof and I was positive aging for cardiolipin antibodies… the inflammation was bad enough to partialy dislocate and slightly separate my shoulder and tear tissues in my flank:/ that’s when my new condition "anemia of chronic disease " started. Ive had lots of blood work since and although it’s not normal everything is much less elevated, I can live with that:)
The highest my sed rate was 127- yep that high and I ended up in the intensive care unit. But you can feel lousy when even a slight elevation- one thing doctors forget is that with medications the sed rate can be normal or borderline high and yet your disease can still be raging inside.
Sometimes my SED rate doesn’t exactly reflect how I feel. But that could be because I have other autoimmune issues that cause fatigue and pain. My SED rate is usually between the mid 60’s to mid 80’a, with my highest (to my knowledge) being 104. Once I was down in the 60’s. I also think everyone experiences pain differently. I can still get around, but with much difficulty I don’t know if I answered your question. Hang in there. I think it’s great you’re keeping track of your blood tests vs. how you feel.
I am glad to hear that I am not the only one that feels lousy with chronic pain and a normal sed rate. I also have fibro besides the lupus so I am sure that adds to the pain levels and fibro does not effect the sed rate. My only concern is if my sed rate every does go up I can't imagine the pain that may come with it. Guess I should be thankful that although my pain is chronic that it is manageable. Thanks for asking this question, good discussion idea. Hope you continue to feel better and you results in Aug are even down more.
Hi Holding onto Hope! Yes, I too can’t imagine the pain that comes with a higher reading. Now, we know better through our fellow Lupies. Time to always take care and stay positive and keep fighting no matter what. Take care.
When I was first diagnosed my ESR was around 120s or 160s can’t remember super high. That’s when I was in the hospital for almost 3 wks. It was so nasty! I hope it never gets that bad again. It’s currently in the 20 range and I have up days and down days. Hope yours will be down again!!
