SLE (Systemic Lupus Erythematosus)
Living with and combatting Systemic Lupus Erythematosus (SLE). This is place to build a network of experts, place to share your thoughts and get information.
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What's New Today
15 days ago
Hello.I was diagnosed with sle about 4 years ago and I have quite a few complications from it.the problem is that some people don't see the battle I go through every day because (as ive been told)I have a good poker face.and because of my ability to mostly keep it to myself,my issues aren't taken seriously by some.also I sometimes struggle with work when I am experiencing pain.any suggestions would be appreciated.thanks
4 months ago
Hello, I am a 21 year old female who was diagnosed with SLE four years ago. When I received the diagnosis, I was a very active person who worked full time, despite my constant fatigue. Since the diagnosis, however, my general mobility had slowly declined, to the point where I had to use a cane, and at this, my health seemed to have plateaued for a couple of years, with flares approximately every three-six weeks, and I reduced my work hours to part-time. In March '16, following a short admittance to hospital, I had to hand in my resignation due to a sudden deterioration in my health; I could not walk the short distance to my corner shop, with my cane, without my legs giving way. I had quite a physically demanding job whereby being on my feet was essential. I am now at the point where I have to use a wheelchair to get anywhere, because I have not even be able to stand for months. All the while, I've been seeing specialist after specialist, trying to decipher what is going on, because Rheumatology is not convinced that the sudden decline is lupus-related (especially since in recent months I have accumulated more health problems ie. tachycardia, eye muscle wastage and intracranial pressure). I am currently under Rheumatology, Neurology, Ophthalmology and Cardiology in the hope that someone can work out what's going on. I'm so frustrated with it all, and it's really starting to take a toll on me emotionally. Any thoughts are greatly appreciated, thanks.
Confused and scared said...
6 months ago
I tested positive for Lupus recently and am unable to learn what I need to know to control this. My doctor ordered several blood tests....what is he looking for?? Have had a rash since May2016 looking better can I expect it to clear up completely as I continue treatment? Long-term prognosis is unclear. What should I be asking my family doctor and Dermatologist.
about 1 year ago
I was diagnosed with sle lupus last year. Not sure how long I had it before my wonderful current doctor really listened and did blood work to test for lupus. I have found the last couple months that I get tired out very quickly. I am living on a small retirement from social security. I dont want to be a burden to my kids. My son is mentally retarded. I need dental work done but I dont have the money. So need to find dental and vision since I was told the medicine I am on can cause blindness which scares me. Any help or comments would be appreciated.
over 1 year ago
I pray in telling my story and asking my question I will not be judged too harshly. I met a man a year ago and we instantly connected. It was/is very much unexplainable the deep soul connection we share. Shortly after we met I found out he was married but that his wife had a severe form of SLE. She has suffered with this progressively getting worse for five years and is now in bed most of the day. He has told me she is in too much pain to be intimate and much of their communication at this point is either by phone or text and he has for several years now pretty much had his own life because of her disease. Needless to say, after much thought he entered into an eyes wide open relationship with me. It is as I'm sure everyone else has said...a relationship like no other. We both imagine our lives together and if she was well he would leave as although he loves her dearly, he hasn't been in love since even before she got sick.
None of this is justifiable and we both understand that. So I will make no excuses. However, at this point we are very much in love and all of us in limbo. She is tired and with almost no hope for recovery. We want to be together but he will not leave her when she is this sick. There is no more medicine to try as she has done it all.
I know I provide for him much comfort and relationship that he hasn't been able to share with her. My question is what does one do in this situation? This could go on indefinitely or at least for many more years. He struggles with wanting to have a life, feels guilty that she is in such pain, and very much loves me. I very much love him and am understanding of the situation but can't be in a relationship like this forever. I want to be able to have a real relationship. Please help. And I know all about God and marriage vows so please don't yell at me about that. Thank you in advance.
about 2 years ago
I was diagnosed with Lupus and Fibro about 4 years ago. It has changed my life in the worst way possible. My mother had SLE as well. She passed away 4 years ago and along with her passing in a MVA accident suddenly brought on a severe Lupus flare that put me in the hospital and wiped my immune system off the chart. I had to receive chemo to rebuild my platelet count. I am now stable but deal with constant pain and the fatigue is just overwhelming and has engulfed my life. I am a prisoner in my own home and have no life. I once was an active working happy individual that loved life. That was 4 years ago. I still struggle everyday. But NOW I stay positive because I know I could be worse. So I am grateful to my LORD. Without him I would not be here. He has taught me to have faith and trust him. So I want others to do the same. I WANT TO HELP OTHERS WITH SLE WHO ARE STRUGGLING LIKE I ONCE WAS. Please contact me at my email if you would like to be Lupus pen pals. God Bless.
about 3 years ago
I was recently diagnosed with "a slight positive" ANA, and I am now being treated for "possible" lupus. I have been sick for a year now this week, and to say that this last year has been a roller coaster is an understatement. I'm 20, and up until last year I was generally healthy. It's frustrating to feel like this all the time, and it really takes a toll on me emotionally. My blood work is always bouncing from a positive ANA to a negative ANA, and I never know what to expect when I go back to my doctor. I guess I a more concerned with not knowing what to expect in the upcoming months/years, and wishing that there were a way for me to connect with other people suffering with this.
about 3 years ago
My wife of ten years, eight fighting Lupus has sent us into near ruin in the last few months while going though a flare. Between over shopping and miss mangement of our house hold bills, we may not be home less but it's bad. The loss of trust is the greatest loss. Not being able to work , managing the house was important to my wife's sense of worth and a huge help to me. Now that's gone with a lot of trust and bits of other things. How do I move forward ?
Stressed Gayle 1 said...
about 3 years ago
I have a 23 year old daughter with lupus and kidney failure. She is experiencing a lot of anger and depression. I am totally exhausted trying to keep her healthy and she does not care. I'm considering assistant living because it is getting so hard to care for her. I have tried several therapist and support nothing seems to help. Any suggestions?
over 3 years ago
Hello Semeer, Thank you for starting a new online support group on this topic: Systemic Lupus Erythematosus (SLE). I hope that you are able to give and receive the support you need during your journey. If you know of others that can benefit from this group, please invite them to join. Thanks!
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