I have scoliosis since 13 years old, im now 34 and diagnosed with lupus about year ago. What is normal?

I have major flare ups/swellings and feet, legs, Arms and hands. I suffer a lot with pluerisy, now have pins and needles in head with swollen left side of face, twitching under eye, pins and needles in left of chest and more than normal back pains. I was only diagnosed a year ago but suffering symptoms for about five years. I constantly feel tired and ill. Please help - what is "normal" and what should i be worried about. This is my first time on site and would be so grateful of any help and advice.

Thank you, Karen

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  • Hello Karen, there is no one answer to this as everyone is different. I suppose being able to function properly would be normal but it can end up a battle. Just pick out all the important things you need to do in life and if you get anything else done it's a bonus. I think we all probably worry too much at times but when you have no real guide lines or positive advice from the experts you can feel really lost and alone. That's why coming here is a good thing to do, I've got so much information and advice from people with similar problems on here. You can also try Lupus is real!!! on facebook,a good place to moan, groan, chat and ask questions,they are a lovely group of people. I do hope you feel better soon.xx

  • Hi janetd, thank you so much for your reply. Life does seem a battle at times. Im married with two kids, life the last few years has become so hard, with my husband becoming my carer. Im in the middle of a flare at the min, so im on the sofa for the forseeable as my feet and ankles swell so much they look like big brick.

    I will def be on this site, as everything i have read so far has been so helpful, Real advice from people experiencing the same, not docs telling me how i should feel.

    Again, thank you. Hope you well and hopefully speak again, Karen xx

  • Hi, I get pins and needles in my head also, normally at the very top on the crown. I put mine down to inflammation as you can get it anywhere just about throughout your body.

    I suggest you start keeping a diary and write down you symptoms as when yoy see your rheumatologist I'd your like me you forget half the things.

    It might be worth asking to be referred to your nearest lupus specialist centre even if it means you have to travel a bit. If the problem with your head persists its probably worth trying to get a referral to see a neurologist who will probably have more idea what's going on. It can all be a bit scary especially if it starts affecting your internal organs or brain but remember it very rarely does! If you are one of the unlucky ones my advice would be take one day at a time and do what your body tells you it can mange. I still have a lovely life despite everything. Demand answers and make suggestions for referrals to specialists its your right! A lot of doctors and even rheumatologists don't take lupus serious remember its your health and your suffering so if you want changge your normally the one who has to do something about it. Good luck and try stay positive x x

  • what is normal only you know really if you dont feel as well as you did ask to be seen until some take you seroisly your not going mad.

    good luck

  • Hi Karen. As the others have already told you, it is not really possible to say what is 'normal' since everybody experiences things differently. If you'd like one of our free information packs so that you can learn a bit more about lupus then you can email me at paul@lupusuk.org.uk or send me a private message with your name and address.

  • Hi to everyone, may i thank U all for your replies and apologies for tsking so long with my thanks. Unfortunately i have been very up and down as of late and only just feeling upto keeping in touch. I have been suffering badly with memory loss, swelling of joints and being stuck on sofa as cant tackle stairs. I thought things were improving, however my memory causing me big problems. Does anybody else have experience of this, thank you.

  • Hi , I know it has been a while since you last wrote on this site, but I just ran into your question and I too have scoliosis with an auto-immune disease which was once referred to as lupus. I can share two pieces of advice. 1. I have noticed that sunlight does create pain in my problem areas being hands to neck. 2. avoiding gluten and sugar have also helped to live an easier life with minimal pain. I also drink tumeric and ginger tea's on those hard days. These are just a few of the things I do to help me have better days.

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