Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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Wondering why I feel so alone...

deleted_user
deleted_user
I was dx with lupus almost 9 years ago and have had my share of ups and downs. I have a wonderful fiance, 2 fabulous children, and a very supportive family. Even though I have all that along with amazing doctors, I still feel alone. I get so depressed sometimes that I just break down and cry and honestly don't know why. I feel like the disease controls everything about me and my life and like there is nothing I can do to help it. I get frustrated and lose my temper so easily...which I think is from the Prednisone. Also because of my lupus I have a few other diseases...antiphospholipid syndrome, ocd...just to name 2. My ocd is so bad that its beginning to affect every aspect of my life. Does anyone else with lupus have ocd too? Its like I'm so scared of germs and things being 'contaminated'...it drives me nuts. Sometimes because of all the stress, pain, and stuff that I have to deal with with being 'sick'...well, I just feel like I can't do it anymore. Just wondering if anyone else if feeling like this or ever has and what, if anything, I can do to get past this tough time.
deleted_user
deleted_user
I don't have OCD but I do feel alone most of the time. Along with the loneliness comes depression and a feeling of worthlessness.
deleted_user
deleted_user
I don't have OCD either but also can relate to the feelings you have expressed. I know it's bad enough dealing with Lupus then to have meds that really screw with your temperment like Prednisone does makes it just that much harder. Zoloft helped me with feelings from the lupus and the prednisone. It couldn't hurt to talk with your Dr and let him/her know what feelings you are having. They may be able to come up with some suggestions to help you out.
deleted_user
deleted_user
Hello! Please visit www.lupusbutterflies.ning.com

I know you will find all the support you need as well as here. The site is for LUPUS basically, but covers all the topics you mentioned. I hope you;ll visit, even join. It's a wonderful family. David286 just joined, and I think he is finding that we have a "family" there, with lots of support and encouragement. LOTS of info, please visit!! xo Kimberly
deleted_user
deleted_user
I have a bit of ocd,I think sometimes it is a matter of control,if you can't control what is happening to your body,you try to control what you can, which could be your invirament.Just a thought.I have my own cup and plate ect and wont use any other,spoons to,own towels,own bath stuff.Everything like that can only be used by me.I have no sense of taste and smell,have not had for 11yrs so don't know how much that contributes to it.Was diagnosed with Lupus in 1984.Hope this helps a bit.Take care and hope you feel better soon.Hugs and prayers to you.Wen47.
deleted_user
deleted_user
LoL, I was just dx'd with churg-strauss syndrome. Basically for all that don't know it's lupus in the blood vessels. Funny thing is. I've also been dx'd with bipolar, and BPD. These were dx'd lonnnnng before the lupus. After doing some research, mental issues can go hand in hand w/ this dx. Between illness & meds, it's even harder to stablize.
deleted_user
deleted_user
I don't have OCD, but I do feel alone at times. Sometimes the Lupus isolates and that all makes for feeling sad and depressed and not worth much.
deleted_user
deleted_user
I DON'T HAVE OCD EITHER, BUT I'VE BEEN DEALING WITH LUPUS FOR 11YRS EACH YEAR WITH A PROGRESSIVE STAGE. THE MORE PROBLEMS THAT ARISED AND THE MORE LIMITATION THAT I FOUND CAUSED ME TO BREAK DOWN MORE. sO WHAT YOUR PROBABLY DEALING WITH IS FRUSTRAIONS AND YEARLY SIGNS OF DEPRESSION. I'VE JUST STARTED CYMBALTA AND IT HELPS ME ALOT...HOPE YOU FEEL BETTER GOD BLESS...:>BELIEF
deleted_user
deleted_user
I do not have ocd but I do feel very isolated and alone.
deleted_user
deleted_user
I know how you feel. I am not OCD but I am very aware of who is around me and what i can catch. I am a receptionist right now, so all day I touch people's hands and things. I am very wierd about that too. hang in there though! I know it's tough but we can all deal with it. Don't let the disease control you! You control the disease. Try Turning everything negative into a positive and see if that helps. hang in there, we are all in that kind of situation.
deleted_user
deleted_user
When I was on high doses of prednisone (40-60 mg daily), I noticed that I also displayed symptoms of OCD. I was constantly washing my hands, straightening things, making sure all of my clothes in the closet were facing the same direction, constantly cleaning. When the dose of the prednisone was reduced, the obsessive behaviors lessened. Don't give up! You are blessed with two children and a fiance. I have two wonderful adult children, but lost my marriage due to the strain of the lupus. I find it difficult to date, what with the ups and downs of prednisone, arthritis, kidney disease, etc! My faith gets me through the tough times. I believe that all things happen for a reason and that our suffering on earth prepares us for everlasting happiness. My thought and prayers are with you as you struggle with the depression that accompanies this disease.
MToennis
MToennis
When,I started with this, I was so hopeful that the treatment would put me int remission. I am losing hope of that now and guess I will have to face that I am not giong to be "cured". It is hard to see your dreams slipping away, but I am grateful for the good days and for allI do have. I am becoming a germophobe due to being sick so much due to the prednisone, I think. No ocd, but I sure could see how that could happen. Maybe not feeling so alone in this will help us both.
deleted_user
deleted_user
I think everyone feels alone at some time but we with lupus sometimes feel it more because it is hard to feel bad all the time. I am not OCD really but I find I keep checking things because this desease makes me forgetfull. It is a pain in my fanny and I can understand how you feel. However we have this "home" to come to for support. When I start to feel down I come hear and read the disscussion page. It makes me feel less alone. I hope it helps you too.
deleted_user
deleted_user
Hi everyone, boy am I glad to find you all. I feel very alone as well. No I donot have OCD and am very sorry you have to deal with that as well. I am very afraid of what is next, I used to just deal with the joint issues, but now it's getting serious. I now have Pulmonary Emboli, one in each lung and a Brain Anuersym. I am scared and my husband of 12 yrs left me for a healthy 29 yr old. The boyfriend I was dating this summer booked when I wound up in the hospital with the PE. Will I always be alone? This disease is the pitts. I feel like a kid trapped in an old persons body! Anyone else? Nice to meet all of you! Judy
deleted_user
deleted_user
I am brand new to this site and so far I have gotten so much comfort from people here who all have similar problems-it's good to know that there are people out there like us-even though it sucks to be us-we are all out there somewhere. cymbalta has also helped me battle the on and off depression-it sort of helps keep you motivated and has really helped me with fatigue-so you never know until you try.
deleted_user
deleted_user
It does get better. Talk with your Dr. and let him/her know. It may be the dose of prednisone, it may be the lupus, or it may be a bad day. That's why you need to discuss it with your Dr.
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