Lupus?

[ToughDaddy]

I was initially diagnosed with IBS and costachrondritis a few years ago, but now dermatologist thinks it is probably Lupus. I will have Lupus tests soon. Also concerned that 2 of DC have same symptoms (both already have asthma, eczema, food allergies + tell tale skin rash/mouth ulcers). Doctors are still learning about the various autoimmune conditions (from eczema to Chrons to IBS to Lupus) and the internet is full of doom and gloom. We are all going about life at present but fear of the future is really getting to me.

I have Lupus as well as Fibromygalia and CSD, I work as a Childminder doing a 60 hour week, as well as being a wife, mother and Grandmother.

I just carry on, and dont let it get the better of me. (to bloody minded to, my dr says)

Dont let it rule your life, is the best advise I was given.

thanks. I think i have been living with it for atleast 8 years. Have been treating complaints as niggles and keeping fairly fit ( I can run up to 20k) but I am now quite scared for all of us. It is the bit that says "Lupus may strike aggressively as an acute and severe illness". I also feel like I have given my children and DP a great burden.

I was scared as well when I first found out, (DO NOT LOOK ON THE WEB), but have found it not to bad, (In fact the Fibro is much worse), but it did spark the Fibro and CSD.

Its managing it I suppose, I do find the allergies the worst thing, although I am not allergic to food stuffs, (I dont think) hay fever type allergies are bad, and I have to make sure I have anithistmines at all times, but you can do things like covering your eyes when out, closing windows at dusk, small things which help.

Do watch out for being out in the sun, I do find I an much more suseptable to sunsstroke and sun burn.

I do get flares, of more or lesser degrees, usually lasting from anything between a wekk to a month at a time, with about the same amount of time between.

I had a very bad flare at the beginning of the year, went on for 4 months, but the problem was more that my sleep went totally haywire and was only sleeping a few hours anight, which made everything else worse.

Now i am back to normal(?) and coping well.

It was the sun sensitivity that triggered the visit to the dermatologist.

Your encouragement is a life line. I was feeling very sorry for myself this morning. But I have been so blessed otherwise, I shouldn't complain but it still feels tough.

Sorry had to go out, I have days that I feel 'Why Me' but most of the time I just get on with it.

It does worry me as I get older tho, how imobile I might become with it all.

I will try to keep fit as I read that this really helps. I am 40ish and I do a reasonable amount of running. I am now convinced that my sister was misdiagnosed first with MS and then B12 deficiency. And my mom thinks that she is suffering from IBS but her symptoms are more Lupus. And I now think that my grandmother's death at 44 was probably Lupus related (heart failure but she complained about inflamed chest for years). Atleast I know what i am dealing with. Just want to be here for my 3 DCs until they grow up.

do you take steroids?

Have you used the LOndon Lupus Centre

I take this along with other painkillers which include for the Fibro, it takes a while to work, but DOES work.

No have never been to the Lupus Centre I live I Dorset.

My mom had what they thought was Arthritis for yeasr but am convinced it was Lupus.

I have had no real organ trouble apart from kidney infections.

I have been having acupuncture for the fibro, which has made me feel better with everything, might be worth looking at.

thanks. Has anyone ever said that Aloe Vera juice helps?

Dorset is lovely so good for stress busting? I am in the rat race in London

Havnt heard about the Aloa vera, how does it work, any idea?

Aloe vera is a (super) plant that people use topically and intestinally re: anti-inflamatory. very good for burns, ezcema etc. Seems that it would do no harm but not a replacement for your prescribed medecine.