negative bloods and medication

blood tests allways come back negative for everything, and there is never any sign of inflamation.......... so why is it the only thing that gives me any relief from joint, abdo, and pluretic pain, is nsaid's or steroids??? I have been taking max dose of naproxen/ diclofenac (I alternate depending on if joints or abdo hurts most) along with pain patches, tramadol, and dihydocodine for years now. I keep telling docs that the opiates do not work, it's the nsaids that are helping, I would happily give all others back if I could take 3/4 x more nsaids each day. I have tried doing this, (I know they cause damage but i had had enough of being fobbed off with more and more opiates.) I took 4000mg naproxen, 4x 1000mg per day, for 3 days- I had 3 days relitivly pain free). recently had 2 weeks of 10mg prednisolne per day, this produced same result, but rhuemy says I cant have it as blood tests are normal!!!

If my bloods are normal i.e. no inflamation............ why do nsaids and steroids work??????

Im fed up of having no quality of life. I recently was awarded PIP (daily living and mobility - standard rate), but I dont want to be disabled!!!! If the tablets work surly I that shows theres something going on dispite the bloods being negative???

note: 2 1/2 yrs ago I had exploratory surgery. dispite all bloods and swabs being negative, when they cut me open I was full of inflamation and infection. they had to wash out my abdominal cavity and cut adhessions (no previous surgerys), they sent the fluid they found off for anayisis but no infection was found. this is proof that there can be inflamation even when blood tests say theres not?????

12 Replies

  • This happens to me. One doctor told me I had all the markers for Lupus, another told me there was nothing in my bloods at all!

  • LynneR- are you receiving treatment? or had a diagnoisis?

  • It's called seronegative lupus - where the blood doesn't show any of the markers but the disease is present nevertheless. I have that and yes, I've been diagnosed with lupus and I'm on immunosuppressants.

    But not all doctors are prepared to medicate for seronegative lupus, maybe your doctor is one of those. You might need a second opinion.

  • Purpletop- do you not have any sign of inflammation in your blood either? the rhuematologist I saw, point blank said seronegative lupus does not exist and he is one of the top ones in the country! Anyway, I still have all symptoms and am suffering even if blood dosnt show any signs. My GP has refered me to Dr D' Cruz at London Bridge- I called them this afternoon to ask if they recognise seronegative lupus and are will treat it. The receptionist said they do, so hopefully I can get treated there

  • No, my inflammatory markers are always within range regardless of how active the disease is.

    You're in good hands with Dr d'Cruz, best of luck!

  • thanks x

  • Dr D Cruz is the best doctor for lupus he was the one that recognised my lupus 20yrs ago after other doctors told me there was nothing wrong..

  • capricornwoman- Thanks for that! my husband thinks coming on this site is a bad thing, but it's definatly helping me. the people on this site are actually living with the conditions and symptoms and have been through similar experiences so can relate to how I am feeling. I am very open to the fact that I may not have Lupus, or indeed any sort of autoimmune condition. however, I am not happy to be dismissed purely on the basis of negative blood tests when i have first hand experience of blood tests being wrong, and there are so many people on the internet that are being treated sucessfully dispite haveing negitive bloods. the fact that Dr D Cruz acknoledges seronegative lupus and is willing to treat it is very reasuring, and gives me hope that he may beable to help me. x

  • Dont be put off by anyone elses know how you feel because your the one thats experiencing it.

  • My blood tests almost always come back negative for the lupus markers ever since I was diagnosed 3yrs ago. I had a skin biopsy first that confirmed discoid lupus. But I also have a tragic history of systemic lupus in the family. I suddenly had other complications including chronic joint pain, bouts of paralysis and collapses, infection after infection, loss of sight in one eye, and my skin is only improving now after starting stelara this year. I've had specialists (rheumys, dermys, neurologist, orthopaedics, ophthamologists) shrugging their shoulders admitting they don't know what is going on, some saying I have fibromyalgia, SLE and psoriatic arthritis when later biopsies showed no sign of discoid lupus despite terrible symptoms consuming 99% of my body. Hopefully Dr Cruz sorts you out.

  • Hello have you tried to treat the abdominal issues? I'm in the same boat you are with doctors and symptoms. I suspect on top of everything I have leaky gut syndrome which can cause a lot of the symptoms we have. I quit focusing on the headaches and have focused on healing my gi tract. I'm taking hgl, slippery elm, glutamine and aloe juice. My headaches have cut back tremendously. Of course a clean diet as well. I would try not to take so many NSAIDs as they can cause harm with the high dosage you are taking. Your liver will eventually be affected by it. 6yrs, 10 doctors and a whole lot of frustration! Hope you feel better xo

  • This can happen.over the years I've been in and out hospital with inflammations in bowels, stomach ,kidneys,liver and pneumonia. ... had to get iv steroids and antibiotics...sometimes inflammation was showing up,sometimes not! Twice I've been unable to walk at all...If I had not collapsed at work and been taken to hospital last year I would still be up and down to doc who did'n't really have much clue

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