Blood results

[Sue2803]

Just had phone call from Lupus nurse to say bloods I had done on Monday were 'unremarkable'. Her words not mine, why then, do I feel so awful, with aches,pains and totally body tired!

[Lorelei]

Hi, Sue2803! I just joined this forum yesterday and posted my first question which was basically the same question you pose here! After 15 years of positive blood labs, the tests have all turned negative for lupus, but I still feel lousy! I have all the same fatigue, joint pain & swelling, muscle pain, night sweats and chills, fever, sores in mouth and nose and ulcers on the skin of my arms! MOST frustrating is that my rheumatologist told me that after all these years on disability, I should feel well enough now to go back to practicing dentistry full-time!!!!!

The impression I have from reading lots of questions and answers here is that this happens often ...It has happened to many people who participate in this forum. The labs are okay and they still feel terrible! A few kind people have answered my question, and their answers are consistent with this.

I think that this may be a part of the disease. Sometimes the labs look good and I feel very bad. Other times, my labs looked bad and I actually was feeling a bit better. I don't think the two correlate well at all!

I am going to seek a new rheumatologist. I need a doctor who recognizes the importance of LISTENING TO THE PATIENT THEN TREATING THE PATIENT'S SYMPTOMS AND NOT JUST TREATING BASED ON LAB RESULTS ALONE!!

I was absolutely stunned when this rheumatologist told me to return to the full-time practice of destistry without even asking me how my symptoms are. I am no more able to work now than I have been at any time prior to this since I got sick.

If any lupus patient has a rheumatologist who listens to how you feel, believes you and treats your symptoms, no matter what the blood tests looked like that month, you must appreciate how lucky you are!

I really cannot explain why this happens to so many of us, Sue, but I have told you my experience simply to share, to let you know that you are not alone in this! It is such a frustrating and helpless feeling, I know! I hope that this helps you somewhat. Trust in what your body is telling you! Keep asking for answers and help from your physicians.

I truly hope that you will feel better soon! Please take good care of yourself!

[Sue2803]

My Lupus bloods and APS bloods still show up the disease, its the ESR, which is the bodies inflammatory response, this should rise when you are having a flare up. Mine hasnt but I am in so much discomfort and tiredness. The Lupus nurse said it could just be a bug and asked me if the steroids were helping. They are, very much, so it cant just be a bug!!!. I know this is a flare but feel a fraud because of the ESR result.

[pollywolly]

I was told by a professor of rhuematology that steroids 'mask' the blood results so are not a good indication of the measurement of the disease..

please dont think that your doctors dont believe you because of you blood results,my bloods have always been normal, i have never shown any raised levels of ESR or anything else,i changed my consultant because i wasnt happy with my treatment, everyone has the right to change to a different consultant, im so glad i did,because my rhuematologist takes in everything i say about my pain & she knows its not in my mind regardless of blood results, please dont let that annoy you,dont give up! They know you have Lupus & they know your in pain, these blood results are meaningless sometimes.

[Sue2803]

Thanks for that, have to go back to GP tomorrow anyway, so will have a chat with him. x

[rw3399]

I was diagnosed mainly based on my symptoms but also because I had a positive Lupus Anticoagulant test (which I now take warfarin for permanently) and also positive oligiclonal bands from my lumbar puncture and damage to the spinal cord in my neck. The other blood tests relevant to diagnosis have always been clear. I have a very supportive Neurologist who always listens and says I can phone him whenever I need to. It helps to have someone supportive and number one - who actually believes what you are saying.

[Caroine]

Sue, you are not alone in your experiences.We all share the same experience sometimes I feel they are not listening but they do.Also, it is the way you express these feelings that will make them listen.From my experiences I think the bugs around is contributing to your present state.If your blood markers are fine,lab results are there to help check what is going inside.Another thing look at how physically active you are,do you expose yourself to the changing weather;I'm a culprit sometimes when i've done a lot of joggling around my family I feel hot and could walk under the cold in a light outfit

Take time to slow down a bit ,in between catch some rest and keep warm,may be this might change the way you feel physically.I do hope you feel better.

Caroline

[NeeNaw]

Sue when I am feeling at my worst and get my bloods done, they are relatively normal, and when I am feeling kind of ok .......... my blood results are so high ..... no rhyme nor reason to it at all. The doctors have a protocol to follow and can only prescribe in reaction to results, which for us can suck, but this is put in place to stop over prescribing or inadequate prescribing. I know that this will bring no comfort to you, but I hope you will see that we can all totally relate to what you are going through, and although, we cannot give you a way around it, I hope it helps to know that we are all going through the same thing and at least we have understanding and compassion on this site. God Bless and I hope that you will soon get some ease.

[NatashaW]

I was diagnosed mainly through symptoms and eventually a skin biopsy. Luckily my Rheumatologist does listen to my concerns and doesn't always just take note of blood results. He has said blood results can be very deceiving in a Lupus sufferer which was good to know. If you feel you're not getting anywhere I would suggest you ask to see another Rheumatologist. x