lupus sufferer

hi to one and all I have had s l e for over 16 years and just always went with what I was dealt never ever read up on anything in fact never even listened to docs when they were even trying to explain my head just shut it all out so now I find myself on here wondering how on earth I really have survived this crappy disease with one thing or another emotional wreck that is now me has cost me my marriage and friends whom cant stand this very crabbit woman with the very short fuse has no patience for anyone or anything just peace and quiet and when people do ask how I am I just say am fine because its the same old same old look on there faces yes that's the one but you look alright and healthy it so gets to me I have used to the looks and stares but when I feel ok I go for it and really live my life to the fullest do everything I want to do no holds barred I am on many med but have been on same ones for years so heres my dilemma my eyes are failing hair thinning its took me years to bloody grow lol I now have nerve damage restless legs ache all over drippy nose fever again and just want to hibernate but no rash for a change also my nature has changed again I am now scared to go out live and and enjoy life as I feel I will drop at any given time with no warning now I know my own body know when and if I can or cant do things have even forced myself to do things and suffered for it but this feeling just is not leaving me docs just say anxiety and depression but had these for years 2 I find myself alone at home and socially with only a small hand full close enough to understand me and my mood swings that range from terrified to rage and also teary if I can produce a tear that is anyway just wanted a rant and have done so .so if you have took the time to read this thank you for letting me get this of my chest

8 Replies

  • Hi just read your post.That sounds just like me for years before diagnoses.I thought all this was normal for me so coped the best I could.Anyway long story short eventually knew this wasn't right so around 4yrs ago felt very bad and have been diagnosed with lupus. It took a few years. I'm lucky so far as in no major organ damage but have all the lupus crap with sjogrens, Raynaud's ,chronic pancreatitis, and rhuemy is keeping eye on vasculitis.Do you see your rhuematoligist often.Maybe you need to talk to the docs about the meds you take.Also all I've learned about lupus is from the people just like you and me on lupus UK.Docs I feel tend to play lupus down and don't tell you much.So please learn all you can as it helps so much in dealing with this.Im on 400 plaqeunil a day and so far I feel at least human lol😉Maybe this isn't much help to you.I hope you at least feel a little better soon as I know only too well what you are going through.Take care of yourself.Circles x

  • I will do thanks am on same dosage as you plaquinil

  • Hello and welcome s0ggys0cks. Bless you. 16 years. Wow. So glad you found this site. I joined when I was diagnosed 2.5 years ago, as it came up when I was googling my new diagnosis. It has been a life line for me. Now you have found us make sure you keep in touch. I have read everything I can get my hands on re Lupus, bought books from Lupus UK and become a member with them to get the quarterly news letters etc. The support from everyone is amazing.

    I was diagnosed with SCLE or Sub-Acute Cutaneous Lupus Erythematosus. I started on 200mg x 2 hydroxychloroquine a day straight away. But recently this hasn't been enough to keep me well and so I am on steroids, with a view to starting a complete immune suppressant at the end of July. This year alone has seen me with flares and bursitis in my hip requiring a steroid jab, increasing aches and pains, depression, tendon issues, migraines and ice pick headaches, myalgia with the headaches across my head and ears. A recent MRI on my back picked up a Syrinx cyst inside my spinal cord and until I see a neurosurgeon I don't know if it is Lupus related or not. I also have osteoarthritis, hayfever, allergies to pet dander and house dust, varicose veins and possibly vasculitis. I think I had lupus for at least 5 years before being diagnosed and I can see early warning signs really before this. Hindsight is a wonderful thing isn't it.

    Anyway. I can relate to your comments about mood and patience, sometimes I know I am being completely unreasonable but cannot stop myself. It's awful isn't it?! In fact someone recently posted a similar thing about mood and had some really good replies.

    Have you used the search facility on this site? If you search symptoms, for example mood or depression the relevant posts come up and you can browse through posts and advice, old and new. I find that very useful.

    Stay in touch. Best wishes.

  • Hi, my name is Teresa. I am from USA. A very good website is I, too, have all those symptoms and then some. I will go to sleep and not wake up for 72 hours, but wake up exhauseted. Also, I will go to sleep, wake up and not know my parents names, be very thirsty and othed symptoms probably dehydrated. When I went to sleep it as Sun. pm and when I was finally right it was Wed 4 am. I too have arthritis terrible. Had a knee replacement 1 yr ago. Need another, but waiting till absolutely necessary. I have fibro too. Take all kinds of med, but nothing for pain which causes alot of problems. I am seeing a new rheumatologist and a pain mgt dr. Hope all goes well. Also eye dr. The biggest problem I have is my husband. He is always telling me I am fakibg, isibg lypys as an excuse. Told him I wished ro heck I didn't have it. HE has have never made an attemp to find out what it is or what are some of the flares. Everyone is different. But usually stress can trigger it quicker than anything. Sorry for going on and on.

  • It's hard to watch everyone go and live their lives and you feel left behind! Until 2013, I was fine and I only had flare ups a few times a year, but I was able to live normally. Now that I have been in a flare consistently, I have lost everything and the friends that I had no longer come around or invite me out because they know I can't get there or even if I go, I will most likely need to leave early. December was so bad that I didn't want to live anymore. When I realized where my mind was leaning, I had to really change my thoughts. I realize that even with a disease that debilitates me, makes me moody, tired, sick, etc. I am still alive and I have a purpose. There are people we come into contact with who are going through so many issues and If I had never gone through what I have, I couldn't tell them that it can get better. It might be different, but better. My career was in the public and I had to stand up all day, teach, instruct, interact with clients, etc. I can't do that now. However, because I am good at my job and I need purpose, I am now working on an app for the students that have difficulties retaining information and those who have learning disabilities. Learning was never really hard for me but Lupus makes it hard for me to remember simple things at times. If it weren't for me having Lupus, I would have never created this and who knows how many people will be aided! I didn't mean to make the response about me but just to show you that we have to command our mind, body and mouth to speak life! Even if you feel you're at your worst, if you are breathing, you still have worth and purpose! :)

  • 👣👣👣👣👣👣👣👣👣👣👣👣👣

    Hi Soggysocks;

    I read your post. We who have lupus may be the only people who can actually relate to what and how you feel. I at times can't even stand to be around myself! Get angry, short temper, etc. A lot of emotion issues are side effects from all of the medications we take. I don't know if you take prednisone but, it can cause some of the anger emotions.

    I also have SLE I was diagnosed 3 + years ago. I have a rash/blister on my right foot, and I have had to go barefoot for the last 2 years. Now it feels natural and if I could wear shoes I'd still go barefoot. I get rashes/blisters a lot, I even get them on and around my male private parts. I have lost all body hair from my neck down to toes I have absolutely no body hair.

    I have a blister on my right foot now that has been getting larger for the past 10 days. (You can go to my profile page to see photos).

    Lupus effects us all in different ways but then yet we are all the same. That doesn't make sense but, then neither does lupus.

    I have my motto

    👣I will not let lupus control my life👣


    I do hope you get better physically and emotionally!



    👣The Barefoot Gardener👣


  • Barefoot gardener thank you for sharing your experiences with me I wish you well on your journey health wise, I am slowly getting back out of the head funk I was in just wish the rest of body would follow suit now I broke my ankle in 2 places and although it healed perfectly with no problems it has now caused major searing heat pain which is a problem normally I can cope but this is really dragging me down I have pain management soon so they can advise what steps to take next

  • Oh soggysocks ( great pseudonym) you have friends here. What you have written rings true to so many of us..we can relate to your feelings.

    Rant as oft as you want...someone will always listen.



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