GP now thinks it's Lupus!

Hello everyone, I had never heard of Lupus until about 3 weeks ago, when after blood test results, and all my mad symptoms, my GP said he now thinks I may have Lupus!

My response was "well that's good isn't you can give me some tablets and I'll be fine" I realised when he didn't respond but told me he would be asking for an appt with rhuemy. I needed to check this out!

It was a bit scary, but still thought well it has still got to be more positive than things at the moment, because I'm getting no treatment and things are just getting worse,

That's when I found this site, which has been so good to look at what people have experienced and to finally realise that after being told for 13 years that I have cronic fatigue, I am not going mad or making things up in my head and other people are in the same situation as me! That alone has give me such a boost! So Thank you :)

I am very new to this, and never done "blogging" Please excuse spelling and maybe the odd wrong word :(

I have appt on 6th Dec to see rhuemy.

I hope everyone is having the best day they can possibly have,

take care, Mandy :)

20 Replies

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  • Well done you GP for being on the ball, most of us on here have pretty useless GP's as they seem to know very little about Lupus.

    Anyway, welcome to the lupie club, its a great site and brilliant for letting off steam if you are fed up.

    Sue

    x

  • Hi Mandy, it is great news to finally put a name to your illness, as then you don't feel like a hypocondriac, or mad. as I felt like when ever I went to the GP and your not on your own. and now you will get the treatment you need, I wish you the best of luck and welcome to the Lupie Club Lol Trish

  • Thanks for the welcome :) I'm so pleased I can finally put a name to it, however, I feel like I can't build my hopes up (omg, I really don't mean it like that) in case they say yet again, no its not that! x

  • Hi Sue, thank you for the welcome. As for my GP well, it's taken him 13 years to get to this point! But bless him, hopefully got there in the end, well, I guess we'll see! I love the site, and check it all the time to see if anyone written anything, bit sad eh! x

  • Not sad at all hun, I check it out all the time too, its nice to be among people who understand how you feel. :-)

  • That's true, thanks Trace x

  • Not sad Mandy, I am alone in my life so I am so glad I have this site to come to if my illness is really getting me down, Everyone here knows what we are going through so at least you don't get laughed at or made to feel like your a waste of space on here. I am so happy I found it. The people on here are helpful and very understanding. Best of luck to you. Trish

  • Thanks Trish, take care Mandy x

  • Welcome aboard Mandy. I only joined the site in the last couple of weeks or so and I've been blogging like mad. The site is the best. It's about time we had a forum for sharing our stories, exchanging ideas and information. It's so good to know I'm not alone anymore.

    Valx

  • Hi Val, thanks for the welcome. I've been looking at the site for a few weeks but not had the nerve to write anything, but I think its great and look forward to sharing experiences and getting tips and advice from other people, it can only be a good thing, and yes it's great to know that there are other people out there going through the same things and your not on your own, take care, Mandy x

  • HI Mandy

    Welcome, I have found this site great, not only to let off steam but to here others stories, and tips on how to get through the bad days. I find I don't talk about SLE with friends, family and people from work so much now, I don't talk about it unless they ask. To other people it can be pretty boring, anyway I am sure you will get out of this site as much as I have :)

  • Hiya Bettie, thanks, I no what you mean about the family and friends, to be honest I get pretty bored myself with how I feel, and very frustrated, so its good to come on here and know there are others like me :) and its given me a boost, take care, Mandy x

  • Hi Mand

    Welcome to Planet Lupus. It's pretty similar to planet Earth only us Lupians speak a different language to the Earthlings. We have different definitions for words such as 'TIRED', which to an Earthling means 'I stayed up too late watching telly'. To us Lupians, 'TIRED' means, 'Go away and leave me alone, sod the washing, make your own tea, what's a hair brush, and oh is it time to put some clean clothes on!' You'll find our sense of time and motion is slightly abstract and somewhat slower and many of us have a funny rattle in our bellies when we walk due to the large amount of medication we take.

    On the outside you could never really tell us apart from the Earthlings which allows some of us to mingle amongst them unnoticed. Other Lupians aren't that lucky and tend to come across as moaning, grumpy old buggers (which is me) but thats ok as on Planet Lupus we all understand, we all listen and most of all we're all here for support.

    Nanoo Nanoo!

    Alison xx

  • Well what can I say...... Alison your a tonic :) my daughter has just said mum, whats the matter.... (I guess I don't laugh out loud like that much these days) I fully accept your welcome to planet lupus, thank you :)

    Nanoo Nanoo, right back at yeh! Take care Mandy x

  • Hi Pollyanna, At least you have an answer now and you can tell all to get off your case 'cos you have finally been diagnosed. I felt a great relief when I was told I had Lupus only if it meant people stopped treating me as a lazy hypochondriac.I was diagnosed 22 years ago but now know I've had it since I was about 19. Am now 60 and after 11 ops and various drugs am sort of on an even keel, but the tiredness and aches never seems to go away. Just listen to your body and do what it tells you. I don't tell people too much 'cos they don't undertand how you feel even if you try to explain, and yes I always look ok so they don't believe me anyway. Its something you learn to deal with. Please take care and do what the docs say, Even they struggle with it at times!!

  • Hi Allix, thanks for the advice, although my GP thinks it;s lupus not seen the specialist yet. so I will be pleased when it confirmed :)

    I do try to listen to my body, but like many of us you sometimes push a little to hard and suffer the consequences :(

    You sound like you have a lot of experience so it good to know I can come on here and get advice, thanks again, take care Mandy x

  • hi

    hope the specialist appt goes ok- thought u might like 2 c this:

    butyoudontlooksick.com/arti...

    a friend alerted me 2 this + i've sent it 2 friends+ family as it is a brilliant way 2 explain the tiredness+ the necessity 2 pace yourself -as no-one can really understand unless they've been there themselves- the frustration of feeling exhausted without having done anything is INFURIATING!!

    sheilax

  • Hi Shelia, and thank you for the link, I will defo send this to my family and friends, its really good. Totally agree with you re the frustration :(

    Hope your having a good day, take care, Mandy x

  • hey mandy,

    when i first went to my GP, she thought I had rheumatoid arthritis, and i spent ages trying to suppress the giant symptoms with weak antibiotics. I hope you can get the treatment that you need to get rid of the fatigue- i'm still fighting mine, but that's because i'm only 1 yr into the lupus club :)

  • Thank you :) I hope your feeling good soon, and at least we have found this site, which is great, for advice, support, or just a good old moan! Take care, Mandy x

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