Hi :)

Hi.. iv read most of the recent posts and really hope everyone feels better xx

I couldn't reply due to my lack of knowledge/experience

But really hope the time to come is much easier

I was diagnosed in may this year with SLE lupus. i feel like iv learnt to cope recently

Only because of the lack of understanding of other people towards me..

In may i couldn't walk due to swelling and pain around my body..

It was quite serious

Now with the help of my medication, i am better than before

However, i still have alot of pain and fatigue. . I went to see my rheumatologist last week.. i had sharp pains around my body.. like electric shock.. (pain lasts for few mins then goes)

The response was 'atleast youre recovering and are better then before. Considering you can walk now.. its normal to have pains with this horrible disease'

I was left speechless because if its normal.. does that mean i have to live with these kind of pains all my life.. im 21

I felt like he thought i was attention seeking or not being able to cope

Therefore, i have learnt that there are only a few people who understand.. and i dont like to moan but he made me feel lonely...like no one to turn to for help. So from last week i decided i will just keep all the problems to my self.. at least i wont feel like iv been put off.. not sure if that is a good idea but oh well

sorry for the moan xx

4 Replies

  • Hi, so sorry to read how you are feeling.

    There is a lot to take in and understand, let alone what pain your body goes through.

    No doubt you have read a number of posts on site to see that a high percentage of people have the same response from there GPs or Specialists.

    Don't bottle things up. On this site people do understand how you feel, and the pain you go through, so let this site help you, and get the confidence to stay strong when you have GP or Specialist appointments.

    Keep a diary of things you do, and the pain that may occure, and present this in a concise summary when you attend any medical appointment.

    My husband always says I am too soft and don't question the GPs diagnosis, and insists that if the GP was in such pain they would want it sorted.

    Understandably there will always be things we have to learn to live with, but pain clinics, Physio, medications, diets, are all things to consider.

    Last but not least, friends and family should learn with you, as they can be very supportive, if they understand. ( this is not an easy task) but it will be worth the effort, to have close support to keep you positive.

    Take care, be strong, and don't go it alone....

    Sandy x

  • Thank you for such a kind reply

    I will definitely do that..

    There was a lot going on and the way he responded made me forget everything

    Maybe if i was able to question him about the pain i would've benefit more.

    And as for friends an family, it is definitely difficult but they do help (most of the times)


  • Hi Pearl123,

    Please do not keep your problems to yourself, we have contacts across the UK living with lupus who are available for you to talk to and i can happily put you in touch with them. Just send me a private message or an email of where you are in the UK and i will pass on their details to you. hayley@lupusuk.org.uk

    Obviously, please do feel free to continue using this forum as much as you need, but if you need to talk or need advice on anything at all, please do feel free to contact us here at the National Office on 01708731251.

    Take care,



  • Thankyou

    I really appreciate your help

    I will definitely act upon your advise

    And i turned to this site as i knew i would meet people who understand me

    Thank you again :)

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