Hi my wife is currently going through medical testing for sle and has been for the last 2 years but seems to be getting no help

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Could somebody please help me with some information of the best way I can help and assist her to make life easy for her

All your help will be good

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  • Posted

    G'day from down under . Outback NSW Australia . I am 38 and have had sle lupus for 7 years.. Lupus is a hard thing to diagnose. Every body is different.. Common symptoms are severe tyredness , joint and muscle pain. Inflammation , swelling.. And these are to name a few.. We LUPIES as we call ourselves , are sun sensitive and also can have what they call a butterfly rash on our face. Which is a red/ purple blotchy rash.

    I suggest first . Please give me some more information so I can help u further. Eg her symptoms... Her medication... Comments that the rumatologist has said. I am not imbarised or afraid to talk openly and honestly about lupus and I will do my best to help where I can...

    If u wish there is an red message symbol on my name. That is a private message and is not published for sensitive text. Thankyu for trying to understand your wife condition and help her . It shows great character .. At this point I suggest that it is the little things that count in helping her.. Such as washing the dishes , bringing in the washing. All these little things may seam minor , but to a lupie , it is like heaven...she will be very tired and athargic at times so at the moment , little things count.

    Please contact me with more info so I can help you further. God bless.

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  • Posted

    Thank you for your reply well she has lots of aches and pains on a daily basis which include headaches joint pains and tummy pains she also suffers massively from fatigue. She has had blood tests done and been to see a rumatologist where the result are inconclusive and has not been given any medication as of yet . She has been taking vitamins and lots of pain killers to help as she is low in vitamin b12 and low iron levels .
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  • Posted

    Hi Chatty

    I sympathise being in her situation, which is where I have been. I have been ill for some seven years. I agree with Tracey that all sufferers have different symptoms. I have MCTD (Mixed Connective Tissue Disease) one of which is Lupus. I have the fatigue, headaches, joint pains - everything pain!! I also suffer massively from ulcers mouth, nose & oesophagus although I do not have the skin problem. Sleep is also hard to come by and this in a nutshell affects evey aspect of your life. At the beginning of this year I saw a Rheumatologist who openly admitted to me that they are not know a lot about Lupus and learn from their patients. I was diagnosed with Fibromyalgia which is often connected with Lupus. I am now taking Hydroxychloroquine which has helped dramatically with my feeling of well being, The first time in years I am not soooooo tired. I have Pernicious Anaemia which is shortage of B12 and I note that your wife is low in B12 - this also causes tiredness, numbness in fingers. She needs to be sure she is absorbing B12 as I don't, so no matter how many tablets she takes she will not absorb and her levels will not increase. Your wife needs to stick to her guns and keep telling them how she feels. Maybe she could ask for a trial of Hyroxychloroquine - it won't do her any harm!!! My Rheumatologist has agreed that I can stay on this because of the benefits.

    It is excellent that you are caring for her in this way. I have an extremely supportive partner and although he doesn't understand my illnesses he helps in small ways. I agree with Tracey, even brining in the washing, making the bed, running a bath for her... the small things are priceless.

    I wish you both luck and hope she feels better soon!!!! Tell her not to lose hope and to keep a note of her symptoms to take to her next appointment, or better still take you with her...brain fog is just another little joy we experience!!!

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  • Posted

    Thank you Tracey and Jean for your help and experiences with this as it helps me get a bigger picture of what my wife is going though. My wife also suffers from mouth ulcers too and sometimes comes up in rashes . We are currently waiting for our second appointment with the rheumatologist so hope that brings her some more answers and help to get her feeling a little bit normal she has good times and bad times generally the bad go on for longer than the good.

    She has been keeping a diary of her symptoms so let's hope that helps .

    Thank you again

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  • Posted

    Also sorry to keep asking what from your experiences is the best things she can do on a daily basis to help her be more comfortable.
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  • Posted

    Hi there.. I agree with jean too . It does take a long time for a diagnosis...in my case I had a positive ANA .. But no DNA .. Well my father has sle lupus.. Which is somewhat rare for a male to have... Lupus is spoken to be primarily a female disorder.. I have had several tests over the years. And lupus is some thing that is always changing.. So u need to really be persistent with the tests.. I truly understand that it is very trying but it is something that is needed to be done.. As u are so in touch with u wife's illness , it will help her so much just knowing that she as your support and that u have made the effort to try to understand. Just by asking us.. It shows compassion , and she will truly appreciate that right now.. I have had b 12 injections to compensate the in consistency . They aren't so bad.. Just a prick in the buttox.
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  • Posted

    Chatty.. Well lupus is hard to be comfortable with.. Do you have any anti emflamitries. Like ibuprofen , ? That can help with swelling and pain...??
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  • Posted

    Listening to her body is key. Rest when she can. I know that is not always easy. I take sleeping tablets maybe once a month to ensure I get restorative sleep. When she feels rubbish she needs to rest. The problem with this illness is there is nothing to see, so nobody knows how she is feeling. That can be quite depressing - but since she clearly has your support and understanding she can tell you when she is not good. I don't drink alcohol, eat well and have recently seen a physio who will tell you that some form of exercise is good for the joints. She can take pain killers but on a regular basis this causes havoc with your stomach. Having a nice warm bath is good, although not sure whether your wife suffers with heat flares?? Thats fun - so don't make the bath too warm!!!! If all fails - a cuddle and a good film works wonders - just knowing someone cares how you feel matters!!
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  • Posted

    Hi yeah sorry my name is mark . She has been taking ibuprofen and paracetamol on a daily basis to help cope with the pain not that it really works for her
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  • Posted

    I am still here ... I have had iron injections also.. They work better than the tablets... But to be honest they do hurt a bit . Another jab in the buttox. But truly one any of injection pain is honestly better than all the pai of lupus that she is suffering..
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  • Posted

    Hello jean glad to have some backup help... I feel for those who are just learning about this.
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