Hi. I am gogspr and I live in Edinburgh with my wife. I am 71 years old/young and was finally diagnosed with SLE in Nov. 2014. Have 2 daughters and one super granddaughter. Main problems are severe fatigue and joint pain.
U: Hi. I am gogspr and I live in Edinburgh with my... - LUPUS UK
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hi their young man may i ask what is SLE don't know what that is and if i can help you by researching it for you take care kindest regards bigalan
Hi gogspr - I'm also an SLE patient (stands for systemic lupus erythematosis) which has affected my kidneys. Have you spoken to your rheumy about the problems you are experiencing? These side effects are not unusual, especially fatigue. I found my joint pains absolutely unbearable as my knees, elbows, wrists, hands, ankles etc were all invlolved. I had acupuncture for the joint pains which has been extremely effective and I rarely have them now, however you must, must, must speak to your rheumy first to make sure you can go ahead with this. As for fatigue, I've found that giving in to it, rather than trying to fight it works for me. Hope you feel well soon.
Hi gogspr, I too have SLE and my main issues are fatigue and joint pain. I often have my steroids increased when the pain is really bad.
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Hi gogspr,
Welcome to the LUPUS UK community here on HealthUnlocked. I hope that you are finding the forum helpful.
We have a few support groups in Scotland who all hold regular meetings. Our South and East Scotland Lupus Group would be your closest group which i can happily put you in touch with if you wish.
Would you like to receive one of our free information packs? It includes a copy of our 'News & Views' magazine along with other pieces of literature regarding lupus and the symptoms. I will also pop in our factsheet 'Lupus and Men' for you too.
Just send me either a private message on this forum, or an email, with your address and i will pop a pack in the post for you. hayley@lupusuk.org.uk
Best wishes,
Hayley
LUPUS UK
Hi there. I live in Liberton in Edinburgh and I have SLE with similar issues to yourself. Under Dr Amft at the Western General. We meet for coffee at the Brunton Theatre in Musselburgh this Saturday at 10.30am. A whole group of Edinburgh lupus patients. Fancy joining us?
Hi. Sarah, many thanks for your response. I attended the Musselburgh meeting in May but have been unable to attend since then. Have since May attended the meetings in St.Andrews organized by Elaine Stewart which I found to be very informative. It is my intention to attend Musselburgh on Saturday 5th subject to my wife, Morag, being free to be my driver, this because I was whisked into the New Royal this past Saturday with suspected mini stroke and Morag reserved about me driving.
Sarah, notwithstanding the above, you have a very interesting story/background and it would be really good to be able to share notes at some point in time.
Regards Gordon
I look forward to meeting you Gordon, all being well for Saturday. I hope you are feeling a bit better now.
I got admitted in my first year of lupus with a suspected cerebral haemorrhage which turned out to be an adrenal crisis due to steroid tapering. All good fun!!
Best wishes
Sarah
Hi. Sarah. I am a wee bit confused as the photo of you in the Spring edition of the Lupus mag. (the one where Nicole was protecting you from some harmful light), seems to portray a rather different person as the one on this site. it is not a question of Jekyl and Hyde but one of who am I!
Just rubbish from your friend gordon.
Hi there I am Barbara , what a lovely site this is everybody so friendly 😃