Hi, had a great few days last week, flet like I was "cured" ;D, then about 4 days ago I see rosey red cheeks in my mirror, the next day stiffness and it's been worse everyday since. The red cheeks always means the other shoe is about to drop with me. Today everything aches and I feel hot everywhere. Inflamation.
I had my ESR done in March and it was at 97. My dr says it should be 20. My question is 97 realllllly high or just high?
I am trying to figure out if I can give myself permission to rest and take some specail care for a bit. Seems most everybody elses in my life treats me like I am a faker. Either it's "oh, I ache too" or "oh well you should see how bad my friend is" or "I have a friend who has...much worse"....I get so fed up with stupid, cruel and uncaring family......
So is 97 high or am I just a whinner like they insinuate? thanks Sandra
Sandra sweatheart,
You are not a whiner! I do not know if 97 is high but I can tell you mine is normal and I have TREMENDOUS pain in my joints and muscles and HUGE fatigue! Last night I went to bed in tears after a long soak in the tub with no relief for this relentless pain!
There is no shame in feeling sick/pain, there is only shame in not showing empathy and compassion for those who have it.
You are a good girl who simply does not feel well.
Love to you dearest,
Janna
When mine was repeatedly just over 100 in January my GP was concerned. Lately down to c80 and still told it very high so reckon at 90-odd you have all the permission you need to rest and call in all the favours you can! Hope you start to feel better soon Sandra - the start a flare is so nerve wracking not knowing how bad it will get, when it will start to improve, which dr to see etc. Thinking of you - give yourself all the permission you need to heal xx Ailsa
Sandra,
I think you really have to gauge it by how you feel, not the numbers. My ESR dropped from 77 to 19 since starting prednisone. I had mild joint pain before starting pred and I don't really notice it anymore. Overall I do feel better, but sometimes the side effects of the drugs are worse than my symptoms. Sometimes you just need to take a break if you're not feeling up to it and just take a day to sleep and relax.
OK I give in - what is ESR :P - and whats normal?
Issey
Erythrocyte Sedimentation Rate, ESR; sometimes it's called SED rate. It is a measurment for inflamation in the body. It is calculated by how fast red blood cells fall to the bottom of a test tube in 1 hour.
thanks Sandra
Hi Issey, it depends on the lab as to what is "normal" for them. The lab the rheumy I see says 0-20 is normal until age 50 (or something like that), and 0-24 after that; mine hasn't been lower than 34 for a few/three years now.
Hi Sandra, 97 is high, and I do feel for you, it's a pain trying to figure out what your body is doing sometimes. Gosh, I don't know about you, but the "attitude" just drives me bonkers! And no, you're not crazy, they are for not even giving you a bit of a break - I think a lot of us know people like that.
Hang in there and take care, okay?
Patze
As was already mentioned, it's more important to judge by how you feel, not by what the numbers are. In the 30-odd years I've had elevation of ESR, it never seemed to matter much whether it was 150 (which it was for more than 5 years straight) or down to mid 40's which is where it hovers now, since I've been on Prednisone, the aches and pains don't seem to corespond.
I remember someone looking at my results (when it was "down" to 98) and saying it must be a lab error, because I shouldn't be able to move, let alone work full time, and they didn't believe me when I said 98 was an improvement!
Thanks everyone, at least now I know that 97 means enough that I "deserve" to hurt and therefor take it easy. I am unsure of what i might feel like at a lower rate as my ESR is consistantly up, anywhere from 80 and up. Strange thing inflamation is, i don't have arthritis so i guess it's just the sjs? I am having some trouble with my gallbladdera gain i think...I don't see the surgeon til May 6 about that, maybe that's what is causing the pain and stiffness....
thanks a bunch Sandra
Sandra:
If there is one thing I have learned with this Sjogrens and possible other autoimmune issues (i am just newly diagnosed) is that we do not need permission to feel badly. Some days are good and some days I am down in bed. The hard part is I do not ever know which day it is going to be ahead of time. My sed rate has been stable around 49 but my pain has been horrible. I recently had my gallbladder out and the biopsy of it showed it also was inflamed. To make matters worse I was given Levaquine while I was on prednisone and having joint problems and then broke out with tendonitis. Evidently this sometimes happens with Levaquine.
I do wonder if I really needed my gallbladder out....but I am doing well without it so it seems a mute point now.
Take care of yourself and do not be afraid to ask for or just to take time to take care of you own needs.
Red