Im giving up!

Im giving up!

I have the butterfly rash and joint pain and inflamation along with raynods and I have days lim extremly tired and I have a lot of kidney infections. Anyway iv been dealing with joint pain for 9 years. Iv had blood work and ana was negative I had blood work again and I had an ana positive but it was ssdna witch doesn't count... I am so sick of the pain and not getting treatment for anything its just getting blown off. I finely have a rehmatologost appt october but im thinking its going to be the same as always. I just want to figure out whats wrong!

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  • Sounds like you're having a flare up. I understand your frustration and helplessness with the pain management. Could your doc initiate an earlier appointment with the specialist? I feel for you, though that in itself isn't any help I know! You will come out of it. You will. It'll settle and you just plough on till the next hurdle. Losing weight is something you can always come back to. Don't fret over that one, you have enough to think about. Keep in touch.

  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    Your story is all too familiar and I can understand your frustration and distress. The most important thing is to find a lupus specialist. Not all rheumatologists are expert in lupus. In the UK, St Thomas' Hospital Lupus Clinic, London is a centre of excellence. Dr David D'Cruz is the consultant in charge. Referrals can be made on the NHS.

    If you have private insurance, Professor Graham RV Hughes at the London Bridge Hospital is the best.

    LUpus Patients Understanding & Support (LUPUS) also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    Be well!

    Ros

  • Hi KK. Don't ever give up. Don't let your illness win. There will be better days I promise. Lupus is a cruel and hard disease to deal with and like they say it is a mystery. I've had lupus for years and my blood tests fluctuate all the time. I too have a lot if kidney infections. That alone should concern drs. I suggest you keep a journal of your daily symptoms and good days and bad so you can share with your dr. You may find a pattern and maybe triggers that cause more symptoms. In the mean time be good to yourself. Only you can feel your own symptoms. Be kind to yourself and know you are not alone on this walk. Never ever give up. Keep pushing on. Let us know how you're doing. This site is very helpful when you think you are alone and sharing your story helps all of us to know we are never alone.

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