Depression and Care Co-ordination

Hi All,

Haven't posted in a while as I have just been trying to get on with things. However I am in the midst of a really bad lupus bout and simply carrying on is not working. I have pains all over my body, everyday they seem to get harder to manage and I never really know what is going to hurt and when. Along with this I am struggling to remember anything, which is hard when facing appointment after appointment. All of this is hard enough to deal with but now I feel stressed out by the amount of Rheumy appointments I am getting and the fact that when I get them I don't fee like anything has been explained to me.

Does anyone else feel like their care is out of control and that they are not being told exactly what is going on. For example I had a positive test come back for anticentromere. I do not know what this is or why I was tested for it and all I have been told is that it is positive. I know (from google) that it can indicate scelroderma - but without an explanation I have to use Google to figure out what's going on.

Any support would be amazing as I feel like I am losing my mind!

Love to all


2 Replies

  • Hi cass,

    I am sorry to read that you are feeling so down at the moment and are not getting the support and advice that you need. Do you have a good relationship with your GP? Maybe write down all that you are experiencing or feeling and take it with you on your next visit. This may help you to use the time you have with them the best you can to get the information you need.

    If you would like someone to talk to who is living with lupus within your area i can put you in contact with them, they may have some advice or have some knowledge on the tests that you are having done. I will just need you to email me to let me know where in the UK you are so i can give you the appropriate persons details.

    Please do let me know if there is anything else i can do for you.

    Take care,



  • Hi Hayley,

    I do have a good relationship with my GP, the issue I am finding is that they get the test results months after they were taken - so when I ask them for advice they can't help me really.

    I would love to speak to someone that would be amazing! I shall email now!!!!!


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