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Hi all.

I cant believe how helpful this has been for me. I was diagnosed with Lupus SLE and Hughes in 2003 after a string of illnesses and feeling so unwell.
I had a miscarraige in 2000 and was told it was just one of those things but after getting a DVT in 2003 they diagnosed hughes but said i did not have lupus. I had a healthy baby boy in 2005 due to treatment with heparin for 10 mths thank god and felt wonderful during pregnancy it was then my consultant said i think we should re test you for lupus as characteristically patients do feel good during pregnancy but I developed another DVT and that got postponed. Then after he was born soon after i developed another DVT and then stomach problems which have since been diagnosed as ulcerative colitis (which is another auto immune disease im told). ALL THIS AT 27, OH THE SHAME OF A BOWEL PROBLEM AT MY AGE!!!

Anyway long story short after reading about the great mr Hughes on here I demanded a 2nd opinion and hallelujah I got one!!

The clinic proved lupus SLE alongside hughes and I finally get to see my doc on Friday for treatment!!!!!!!!!!!!!!!!!

Oh my God I cant wait I am praying that whatever they give me will stop me feeling so old and worn. I hate my body at the moment and its killing me that I cant play with my toddler due to utter exhaustion.

But I have so much I need to know if you can help me at all.
I'm scared of what I have read on the condition so far. I was given details of lupus and now need to know what the chances of ending up in a wheel chair are? This has scared me witless. And this wolf like rash, will it ever go away? And the pains, are they treatable? Can I pass this on to my kids? Will it kill me?

Which is worse the SLE or the Hughes? Im sorry if im not making sense I just feel the need to educate myself but the sites online just seem to be so hard hitting I would prefer to hear it from someone who is going through this too. Are you all ok? Are you feeling well? How are you being treated? Can I have more babies?

All that sort of stuff. Please help me if you can just by letting me know your experience also my partner, he really is such a lovely man, but I think he finds it hard to cope with the fact I am so useless at the moment. Daily tasks are so hard and leave me wiped out and Im always getting bugs and well ive already mentioned the bowel thing (God Im embarassed) has the bowel thing happened to any of you?

Also I am hypertensive is this related? And do you guys have huge pupils too? If I am accused of drug taking anymore I intend to hit someone!!!

Anything you have to share would really help me although I have had this almost 4 years technically I didnt know til last week so I really am clueless. Unless you think its better that way? I dont know.

Please help me

Mel
Welcome Mel!

Sorry you need to be here, but as you've noticed, there's a wealth of information and experience here and all are so helpful, informative, encouraging, and kind!

I was diagnosed in 1999 and have experienced mostly mild symptoms, arthritis aches, and fatigue. I have also had what I call "bathroom days", when cramping sends me there 4 to 6 times in as many hours, then I'm fine. I could find no rhyme or reason for that and at present, it's stopped for whatever reason. At the moment, the lupus is fairly quiet, too, and I'm appreciative!

Since you've had a miscarriage, I suggest you read the sticky about APS at the top of this thread. If it sounds familiar, print that and take it to your doctor.

If you can write up something for your new doctor telling about the chronology of your symptoms or if the new doctor can get copies of your old medical records, that will help in the doctor understanding what your course has been. Lupus is a help-yourself sort of disease, I think, and your doctor needs your input about your symptoms and any information you've gleaned on-line or from books should be considered. Hope this new doctor is helpful!

One unwelcome fact of lupus is that most of us have a worsening of symptoms after being in sunshine. Sad, but true. You'll probably feel lots better if you avoid being outside in the heat of the day (11am to 5pm here in eastern US), use SPF 45+ sunscreen, and you also cover up with a broad brim hat, long sleeves, and slacks. Staying out of the sun will let your facial redness fade away, too. I know you have a toddler, but if you can play outside and time your errands to be in the early morning and late afternoon, covered or in the shade you may feel lots better soon.

Someone is usually here or will be along soon, so come back!!

Cheers! Barbara :)





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