Fed up with Lupus Raynauds and Scleroderma :(

Fed up with Lupus Raynauds and Scleroderma :(

I wish they could find a cure for these conditions especially Lupus it drains the life out of you I could fall asleep standing up if I could.Its affecting me in many ways I dread seeing my doctor and consultant because theres always something wrong.My skin is terrible with all of this I have tried loads of creams over the years and not one worked then someone said try this cream CETRABEN its working better than all the other creams I've tried in the past not cheap I bought it on AMAZON but just found out you can now get it in boots,asda pharmacy.I just wish people would understand how difficult it can be living with Lupus as I have met some people who act as though they can catch it.

6 Replies

  • Hi Jennie, I, too have lupus, Reynauds and Highes. I think we all get very fed up from time to time, this is perfectly normal!, We all know how you are feeling, there isnt much anyone can say that will make you feel better, just that things will improve from time to time. Its good to have this site, where you can let off steam, I think sometimes, it helps just to write it down. Especially on here, because people will comment and at least you know you are not alone.

    Good luck hun



  • I only found out about this site yesterday so im sure it will help read what other people are going through just like me and you, it does get you down because you can't do the things you used to it changes your life completley i have my good days as well as bad days i know like everyone else that suffers with these conditions it is'nt going to go away over night is it. xx

  • Hi Jennie,

    I have had lupus with all the trimmings for nearly 20 years. Life is never the same again but we have to accept it and just do our very best to learn to live with it. Knowing a lot about the condition helps and understanding the drugs but most of all I find that I have to listen to my body and learn when to rest and when to be active. I have learnt over time to be confident about letting others know about the illness and have stopped pretending that I'm OK.

    There always seem to be setbacks but then there are the good days too. I feel that there are people worse off than me and then it helps to get things in perspective.

    You are not alone.


  • Hi I feel exaclty the same way, I might be limited on times but I'm not stopped and apreciate what I can do compared to some (does'nt stop me being jealous of others who sail through life with but a few aches and pains but in the pecking order there is a long way below me and I am so please I am not there!!!)

  • I to have lupus and antiphosolipid syndrome (APS) and literally drag myself around all day.... About 65% of the time all I desperately want to do is sleep! I have a 5 year old little boy and don't have the energy to play with him the way I thought I would, it makes me feel very guilty and sad! Both my blood disorders were diagnosed since having him. I do completely understand and sympathise with you. Best wishes Maraid x

  • There are people worse off I agree,I always try and think that on my good days and bad days.I have my family around me I live with my son who is 19 now and he gets angry when he see's me on my bad days but he always manages to cheer me up.Like you Maraid it is terrible when you cant do the things with your child like other parents do but you have to try and make it as normal as possible don't you when my son was little there were certain things I could'nt do because I'm epileptic along with everything else so my son had to deal with that from a young age and he has seen me have seizures they had to teach him the recovery position etc when he was young so as a parent I understand your situation its frustrating. xx

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