Blood test are showing nothing. Is it all in my head?

I have been in so much pain in my legs. It feels like a knife is ripping through my muscles and when I stand up it feels like my bones are going to snap underneath me. I can't leave the house because I can't walk about I'm going crazy! I'm always tired, my body is weak and I'm in none stop pain. But the blood test are showing nothing! Not even the slightest flare up! I feel like I'm going crazy:(

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  • blood tests don't tell the full story, if you need medical help, go get it and be persistent. good luck mark.

  • Thank you!

  • In total agreement with scoobydoo - push, push, push, any knowledgeable lupus medic knows this. My bloods have virtually always been normal as well as physical exams. They seem hesitant to treat based on symptoms alone without some form of clinical evidence. Sit down and try to remember your medical history may be the illness did show itself clinically but a few years ago. I say this because for years I was told there was nothing wrong with me when Id go to the doctor as tests were negative - all in my head - depression. When I was pregnant in 2001 I got swollen optic nerves in both eyes, then the medical profession moved fast MRI, Lumpar puncture, neurological tests - all inconclusive. It was thought Id go on to develop MS. I buried my head, refused to accept it as I had a family to support but 5.5 years on after a 12 day holiday, I started a flare which got worse over 2 months as they searched for clinical proof of MS. Finally they did an ANA test which is very expensive and it was mildly positive 160:1, so they sent me to a rheumy who diagnosed lupus, possible CNS, and as I couldn't walk or talk properly I was hospitalised for 6 days and given steroid intravenously and cychophosphamide.

    Anyway, they acted based on a clinical experience 5.5 years previously plus obvious signs and symptoms which were too numerous to mention here but the obvious lupus ones. Lupus has presented throughout my life even as a child but we put it down to so many other things. So think back and make a note of it as you'll be repeating it a thousand times. All the best. :-):-)

  • I've had the steroids intravenously. It made me ill for a week and a half and only made me feel ok for another week then it was just a massive come down from there. I'm on hydroxichloroquine (excuse the spelling), aspirin and mmf. I also take anti depressants. I keep going there asking for help and they just say that the symptoms are real but are just due to getting stressed. Well if course I'm going to be stressed I'm 16 and I can barely leave the house! I'm stuck in a loop I haven't even got the energy to fight them any more. I feel like when I go there I'm just asking for attention and they just act like its no big deal. I have a horrid time with my lupus. Immense pains, tiredness, passing out, problems eating. It makes it almost impossible to live! But they just treat me like I'm expecting to much. I know they can't just take my word for it but what else can I do if the bloods aren't showing anything and my life is a nightmare! I don't even know what I'm pushing for if they won't do anything without conclusive proof.

  • You're only 16 and facing this alone????

  • My mum and boyfriend support a lot. But they don't understand all the time and expect too much from me some days which stresses me out.

  • HI itsonlyannie,sorry to hear you are having to cope with so much at such a young age, I dont know where you are being treated, but would suggest you ask for a referal to ST.Thomas' Lupus Unit or if poss a similar unit near to where you live. The main thing is please dont give up.When you go to doctors take a relative or close friend who can also express concerns about your health, ask questions and back up what you say. Life would be so much easier for us all if only Lupus played fair and diagnosis was easy..........but until that day comes we must all try to help each other as best we can. So keep your chin up and dont give up with the right help you will be able to have a life.......look up the SPOONS THEORY written by a Lupus Sufferer and show it to friends and family I did and it helped them understand some of what life with Lupus is like, whilst being positive it is also realistic.

    Take care love Lillylou. X

  • Thank you so much. I live in derby but I can always go to London for a bit. Have you been to St Thomas's?

  • Based on your age I would ask for a referral to UCLH rather than St Thomas'. They have a special adolescent rheumatology unit they specialises in treatment of lupus for people your age.

  • Thank you very much both of you. I'll talk to me GP about UCLH and St Thomas'

  • Hi, yes I am under St.Thomas' your GP can refer you as a new patient but I dont know if there is any where nearer to you. The thing to remember is we may have Lupus but Lupus doesn't have us, so chin up and fight for the treatment/care you need dont give up......

    GOOD LUCK.............I had to fight to return to the care of St.Thomas'.

  • Advice from Paul sounds like a good option. X

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