just learning

hi, ive been diagnosed with discoid lupus and sever anemia for about 3 months (although had symptoms and investigations for several years)

ive got lots of questions, such as what to expect? i feel so tired, my eyes sting alot and my muscles and bones ache alot especially when i wake up - is it all connected? - my hair loss scares me and im really not sure how to manage all the stuff i feel (physically and emotionally)

im seeing a dermatologist but she doesnt seem interested in these other symptoms. Actually she hasnt really given me much info - some steroids and told me to avoid the sun - that in itself is life changing!

anyone got any advice about where to get some of these questions answered, should i change my diet etc

thanks

3 Replies

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  • Hi ddwd,

    I have the same problems as you and a few more to boot!

    If you look in the archives on this site you will find many blogs on hair. Some of which I have participated in.

    I have found that part of this disease devastating to say the least. So I know how you feel.

    Have a look at the blogs and you will find some tips.

    The tiredness is an issue we all have to deal with, and some times it is worse than others.

    You must follow up the problem with your eyes.

    I also suffer from Sjogrens Syndrome. It often affects people with Lupus. It seems to go hand in hand with it unfortunately. It affects your glands and causes dry eyes and mouth (and more) It is important that you see a doctor and hopefully they will advise eyedrops (which I get on the NHS as I have to use them a lot, especially at night time.)

    It would be a good idea to have your eyes tested at the opticians and ention it to them.

    The medication I take for Lupus is the same as needed for Sjogrens. I take Mycophenolate, Hydroxychloriquine and when I have a flare I take Prednisilone (steriod.)

    So if you are on medication for Lupus then it will help if you happen to have Sjogrens also.

    I always have to take a glass of water to bed as my eyes and mouth get much worse at night. Sjorgrens dry's your skin as well. Lovely isn't it???!!!

    If your eyes are dry have a word with a pharmacist and take their advice if they recommend eye drops before you get to see your doctor again. They will make the situation more bearable.

    As far as the aching joints go, then you have all the attributes to become a fully fledged member of our club!!! LOL :O)

    Lupus is a conective tissue disease and it affects ligaments and joints. They can flare up now and again and then suddenly the pain dissapears. It mainlt affects hands and wristes, but can affect anywhere. I see a rheumatologist and a dermatologist for my lupus etc.

    I could go on for ages as I have been putting uop with this disease for years now but there is a danger od boring you sensless with all my aches and pains etc! LOL again!!!

    Anyway.....godd luck with it all and I hope you soon feel better.

    Margaret x

  • Hi, sorry you are feeling so down, it is a lot to cope with but over time you will. If you have severe anaemia that will make you tired, it may also make you feel quite breathless. I hope your kidney function has been checked as it may be a reason for your anaemia. It sounds like you may need more than regular ferrous sulphate for it so go back to your GP.

    You don't need to change your diet but it should be a more healthy diet i.e. low salt: to protect kidneys and keep blood pressure normal and low fat: to keep cholesterol levels low as lupies more prone to heart attack/stroke. Plenty of dairy products (low fat kind) for calcium to ward off osteoporosis as you will probably be on steroids long periods of time. Hopefully these steroids will start to work soon and your pain will settle down. Try Paracetamol along with them in the meantime. Go to the opticians and get your eyes checked. They can be very helpful and give you advice which you can take back to your GP. If prescriptions are mounting up get a prepayment form where you pay a yearly amount but get as many prescriptions as you require so it is a good saving.

    I had hair loss a number of years ago and it is horrible. But when the flare up settled down and I was on the right medication it grew back.

    Give yourself time to come to terms with everything and take support and help where offered. I found massage and reflexology extremely relaxing and definitely helped the stress levels. Good luck x

  • thankyou both for your advice, i will continue looking through the pages on this site and hopefully this will help me understand what this illness is and how to cope with it

    dee

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