Feeling Overwhelmed

I am 23 years old and was diagnosed with SLE lupus last year, after many years of struggling for a diagnosis (not entirely sure they even got it right). I have to work full time hours to make ends meet and it is taking a serious tole on my body. My work does not understand and neither does my family or friends.. I feel like I have no support or anyone on my side to talk about this. My Dr. has not done anything for me since my diagnosis... I have been going to walk in clinics for prednisone to try and help my flare ups. It seems never ending. I have tried plaquenil when first diagnosed and it made me very dizzy to the point I was falling over and nauseous where I couldn't eat. I need some advice on how to deal with it, or even just someone to relate to. I just found this website this evening and it makes me happy to know it exists.

If anyone has any tips or any idea on how to help please let me know, thank you.

6 Replies

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  • You're very young to be dealing with this. The people around you need to understand and then they can at least be aware of your lot. You're not on your own, you just haven't found the right support network. My mum had SLE and I must have inherited some of those faulty genes because I have developed Multiple Sclerosis. My mum died before I was hit with it, so she never knew. My life revolves around health issues in ways I couldn't have imagined. But I've had 10 years to get used to it. It is hard, and it is lonely, but I'd encourage you to keep looking for networks where people have some understanding of your and similar conditions. You could volunteer with a group to help others with say, autoimmune disorders. They're surprisingly similar . . . . . MS, MND, etc etc. I don't have answers for you but I can listen. Keep as healthy as you can with good food and walking. Try another GP? Gill.

  • Trying to understand how and why we develop autoimmune disorders has been likened to a "card game" called "Health" by Professor David Isenberg (University College, London) and John Morrow in their book "Friendly Fire". Certain families have more than their fair share of autoimmune conditions, as with your family. SLE, MS, Type 1 diabetes, Rheumatoid Arthritis etc. They explain that the "cards" you are given in life, such as being female, child bearing age ie 20-45 years, anti-DNA, human leucocyte antigen DR3, retroviral infection, complement abnormalities, high fat diet would make up a "lupus hand" Some have more than one disease, for example, lupus, Sjogren's syndrome, under active thyroid (Hashimoto's disease).

    At the same time, lupus is not a genetic disease in the sense that if a mother has lupus, so will the child. It is far more complex as has been shown by twin studies. Nevertheless, some families suffer more than others.

    Be well!

    Ros

  • Thanks for the message. I wasn't making such a direct link genetically, as you suggest. I was just talking round my personal situation. I too am well read on the matter of auto immune disorders, my own included. I hope I was just opening a door to the poster for communication. I've gone beyond looking for reasons etc! For some people knowledge is empowering, but not everyone wants it do they? Thanks again for your interest.

  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    I am very sorry to read what is happening to you. First, you need to be referred to a lupus specialist. Your GP is not an expert and you need to be assessed as to what treatment(s) you need. I do not know where you live, but St Thomas' Hospital, London has its own Lupus Clinic and I would ask to be referred to see Dr David D'Cruz, who is the Director of the Lupus Clinic.

    I also think it very important for you to have psychological support. Unfortunately, this is not a doctor's area of expertise, but is an area that I have developed over 14 years.

    The LuPUS Message Board is where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    Be well!

    Ros

  • I may not beable to help you but im 20 almost 21 and im in the same boat. Well actually I haven't even been fully diagnosed. My doctor thinks I have lupus but she said she dosent want to make the call so I need to see rhematologist.. its frustrating I know. People arounde dont understand! Haha makes me want to cry.

  • Feel free to inbox me if anyone needs a chat. Since my diagnosis I had become very depressed, I was diagnosed is 2009 and ive only just turned 20 It took them years to work it out. From a young age I had been through tests after tests in the end it was a rheumatologist that finally diagnosed me, I do not no any one that can relate to my illness and no one seems to be very aware of it where I am I was so happy when I found this page and would love to hear more about people suffering with lupus.