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  1. Just thought I should wrap this thread up by...

    Just thought I should wrap this thread up by saying that my doc had no answer to what was causing the numb head, but I'm pretty sure it was linked to prednisone withdrawal. Every time I went down...
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    Tgal you are always so kind, thank you, and to...

    Tgal you are always so kind, thank you, and to Nonna and Steve.

    I think with my Mum it will be a difficult one. She understands chronic illness and doesn't for a second doubt the pain and...
  3. Sleepy that's a huge help - it makes much more...

    Sleepy that's a huge help - it makes much more sense! I will check with my doc but it's always helpful to understand other peoples experiences and ideas too. I wish he'd warned me! Nearly ruined a...
  4. Thanks so much for your replies...very...

    Thanks so much for your replies...very interesting! I'm just wondering though, I'm coming off the pred because my doc reckons I have fibro, in which case pred is pretty useless and I should have no...
  5. I'm off the pred...I thought this was supposed to feel good?

    It's the day I've been waiting for - the day I kissed pred goodbye. I thought I would feel great about it. It's what I've wanted for so long.

    But actually I feel terrible. I'm in more pain than...
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    I need your help...

    I'm returning to England soon and will be living at first with my Mum. She has never known me ill, I've been away for over 2 years and ill for 18months of that time.

    I was chatting to her on...
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    Glad you don't think I'm mental Steve! I'll...

    Glad you don't think I'm mental Steve!

    I'll have replace it with something - who knows what yet, but we'll see. Something that doesn't have the potential to cause DILE preferably!
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    Drug Incduced Lupus

    I have thought for a long time that all of my problems may stem from a medication I take called Carbamazepine (I take it for Bipolar Disorder.)

    A rheumy I saw about a year ago said it is a...
  9. Sorry for the late reply Corella, I'm a bit all...

    Sorry for the late reply Corella, I'm a bit all over the place at the minute.

    I hope you found yourself something nice? And I hope it helps you feel as fabulous as I'm sure you are! I'm not sure...
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    Thank you all so much. Rob I can't believe...

    Thank you all so much.

    Rob I can't believe how much you've been through, you must be emotionally exhausted. Yet still you're here to offer us kind words and support when we need it - a true gem....
  11. Hi Corella I am weaning off Prednisone (at...

    Hi Corella

    I am weaning off Prednisone (at docs advice as he thinks it may not be lupus but fibro) and 1mg can make a heck of a difference can't it! You're not the only one. I gained lots of...
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    Thank you everyone. I'm having waves of...

    Thank you everyone.

    I'm having waves of emptiness and loneliness, followed by anger, followed by positive feelings because I have planned to return to the UK and be with my family - I get to meet...
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    So we finally broke up...

    My partner and I finally broke up tonight. She doesn't feel the same towards me any more. It's been a long time coming but it still hurts an awful lot. I have no idea what I'm going to do, I'm in...
  14. Numpty that sounds scary! Did your doc say what...

    Numpty that sounds scary! Did your doc say what had caused it? Still not called my doc, waiting til I've got the money to go in should I need to.
  15. Hi Debbie I can always move it..but I do get a...

    Hi Debbie

    I can always move it..but I do get a paralysed feeling but it's more as though it takes extra effort to move it. Mine is always there but someone less bothersome than others. If I'm not...
  16. My thyroid and vit d are fine (or they were on my...

    My thyroid and vit d are fine (or they were on my last bloods a few months ago!)
    I'm wondering if it's nerve related as I've had some TN (or what I think is TN) recently and also sharp nerve pain in...
  17. Amitriptyline side effect or Pred withdrawal?

    Since my new rheumy thinks I have Fibro, not lupus, I've been weaning off the prednisone and started a very low dose of amitriptyline (just 5Mg daily - I'm already on medication for bipolar disorder...
  18. Thread: It's not Lupus.

    by Shine
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    It's not Lupus.

    Today has completely blown me out of the water. I have been told I probably don't have lupus and that it is likely to be fibromyalgia. It makes so much more sense - I've always been confused by my...
  19. Hi Gemma...I was 24 when I was diagnosed with...

    Hi Gemma...I was 24 when I was diagnosed with Lupus, now 26. It took a lot to get my head around it and still now it gets to me sometimes. The best thing is to take each day as it is..wake up and ask...
  20. I always want to try tramadol but never sure if...

    I always want to try tramadol but never sure if it's a good idea because I take carbamazepine and sertraline. I just want better pain relief!
  21. It looks like it could be TN. It runs right from...

    It looks like it could be TN. It runs right from the temple and it's going under my cheek bone almost to the corner of my mouth. It's spread now and it's around my eyebrow/eyesocket. It is manageable...
  22. Can I just say...OW OWW OWWW OUCH F$@! OWWWWWW!

    Stuuuuuuuuuupid nerve pain in my face. I've had it every now and then for as long as I remember but usually far milder than this. It started yesterday evening. I can't even stand my hair brushing...
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    Hey, I've got Bipolar & Lupus. It's a fab mix!

    Hey, I've got Bipolar & Lupus. It's a fab mix!
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    Yesterday I drove for 2 hours (my poor arms)...

    Yesterday I drove for 2 hours (my poor arms) forgot to wear sunscreen anywhere other than my face (mega oops) climbed a stack of stairs to get a good view from a lighthouse (my poor legs) walked...
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    Just wanted to reply because I understand why you...

    Just wanted to reply because I understand why you must be freaking out! Unfortunately I have no idea what to suggest. I know that's not what you want to hear. Have you tried taking anything for the...
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