Hi this is the first blog i've written but have been reading the blogs for a while. I started with terrible joint pain in Nov 2008 after the birth of my baby. I had already been feeling very tired a couple of years before that but assumed it was just getting older (although i was only 38). Anyway i battled though the pain, kept going for tests throughout the year and even an op to remove lump under my armpit which the dr thought was cancer, but still no diagnosis of anything. My baby died of meningitis in January 2010 and my life was
torn apart. Just after his death i was told i had SLE along with APS and after his death had more symptoms of lupus, the rash, extreme fatigue, reynauds etc. The drs still didnt want to give me any meds until i really needed them so i decided to do some research and began having acupuncture. Within about 2 months my joint pain had gone, im not saying it will be a miracle cure but i have no doubt that it has helped enourmously. I had another little boy in April last year and unfortunately it seems that after i have given birth Lupus tends to kick in and i progessed to Lupus Nephritis and have to take lots of meds now, but i rarely get joint pain and i still have acupunture every couple of months. My condition seems to be hormonal based and i would like to say since i came off the contraceptive pill i dont have migraines anymore. Sorry its been a long story but wanted to share my experience. Oh.. I also applied for DLA this year because of my accelerating condition and was refused but will appeal. Our benefits system is all wrong, i have worked all my life and when you need a bit of help you dont get it.
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liesa
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So sorry to hear what you have been through. Going through these symptoms is bad enough enough without losing your baby aswell big hugs to you!! I have never heard anyone mention accupuncture but could be worth a try for myself as I am having alot of joint and muscle pain at the moment. Take care and I hope you win your appeal xxxx
Hi liesa, your story is heart breaking. I am so happy that you were blessed with a second baby son, i know he dosent replace your first child but he will help ease the emptiness and heart ache. I know because like you i lost my 2 little boys at 30+ weeks pregnant, due to undiagnosed lupus/APS etc.(i was on life support and almost died) then lost my 2nd baby boy a year later. The loss was devastating, i thought i would never hold a baby of my own. I have since went on to have 2 more little boys and now i feel complete, but not a day goes by i dont think about my 2 other baby sons. Like u i suffered emtreme fatigue, joint pain, then eventually was diagnosed 2010 & spent 5 wks in hospital as lupus had gripped my whole body! Cant believe you were refused dla, i think it depends on how supportive your consultant/GP are, you should contact both i demand supporting letters! Glad to here acupunture is helping, hope you continue to do well, for you and your precious baby xx
Hi Liesa, I am very sorry to hear what you have been through. Thank you for your heartfelt share. I have the same symptoms, and was diagnosed at about the same age as you were. I have been on plaquenil, a miracle drug for me for 15 years. I have been helped by Acupuncture, having started that a year ago. It works well for the pain and the Reynauds. Give your precious baby a hug from all of us "Lupies" in the "Wolf Pack".
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