Lupus (how do you cope)

Lupus comes with other chronic illness
January 18, 2010 at 11:11 AM

I have had Lupus for eight years and along with it came RA, chronic fatigue, bursitus, depression, and what seems like a million other serious conditions. I take 26 pills a day and am currently fighting for my disability. The pain is dibilitating everyday and dealing with the fatigue is so hard. No one kids know to some extent that I'm sick but they mostly just think I'm lazy. My husband supports me but you tell there are days he wishes I would just get off the couch and do something. I miss doing the things Ii used to do like gardening and working, sometime the depression is more than I can stand.

I would love to talk to others who understand.


  • RachelG05
    January 20, 2010 at 7:56 AM

    I know how you feel. I have had Lupus for 10 years, I also have RA, RLS, Bi-polar, Fibromyalgia and so on.... IT SUCKS!!!!!!! The only thing I can say is don't give up! You are not alone. We are ALL here for you. You are in my prayers.

  • firemans_baby
    January 21, 2010 at 9:38 AM

    Thank you for your support and prayers! Somedays I feel really alone in this fight, having someone to talk to that goes thru the same things would help me a great deal. I would love to chat you sometime.


  • azsnowmom77
    February 4, 2010 at 2:01 PM

    Oh I understand alright. Everyone just thinks that Mom is being a bum. I try to keep up with the gang, but have to stop way before everyone else. I am good for a few hours as long as we aren't outside. My husband is very supportive, but you can tell that they wish things were the way they use to be! I can on wish that I could do all the stuff I did ten years ago, and it is not age.

  • mommareed
    March 13, 2010 at 12:55 PM

    I totally understand your pain.  I have lupus, fibro, sjrones, raynauds, athritis (have to wait until baby is born to see if it is RA) and arthritis of the spine, and whatever technical name for low white blood cells.  Nobody around me understands what a chore alone just getting out of bed is!  I wake up and my whole body is so swollen, I can barely even sleep anymore b/c the pain in my wrists and my spine..My memory is virtually non-existant.  I hope you get better, and heres hoping one day people might acually understand or TRY to understand what we go through on a daily basis..what it takes for us just to get out of bed.

  • firemans_baby
    March 14, 2010 at 11:30 AM

    Gosh I really dont know how you manage with small children, mine are 17 & 13 so they do alot of things around the house and do the shopping for me. I have gotten so bad that I no longer get out of bed unless I must. I am in so much pain that my drs are finally sending me to a pain mgmt center so Im hoping that will help me some. I wish you all the best and pray that they find a cure or at least a medication that can help ppl like us.

  • codyzack
    April 24, 2010 at 5:59 AM

    what is lupus, i have chronic fatigue and fibromylgia and now depression which has so many symptoms but i was unsure about lupus.  My son knows i am sick alot and it makes things quite hard as you are always too tired to do any housework or anything in general really.  You are lucky you have a supportive husband as this makes a big difference as mine is abusive because he can not handle any situation so the stress makes my condition worse.  I am finding depression is making me really bad and i do not want to get out of bed alot and i feel very alone with this illness as you get that you want a normal life. Good luck with you hope it does not last 12 years like mine, now i cannot work and have no money over it as my health will not take me working full time and there are no jobs that will take on someone sore and tired all the time.

  • tiriedmom
    April 24, 2010 at 9:59 PM


    I know how u feel. I was diagnosed with Lupus a couple of months ago and fibromylagia and i have the worse time with no energy and my joints hurt so bad i will just sit and cry. I have the butterfly rash but there getting that under control with lotion, i use an spf of 200 because i get real sick when i go outside. I've been really irritated lately because its like my rhuemotologist doesnt really want to give me anything to help. He's weening me off of 65 mg of prednisone and has started me on something that starts with a p of 200mg twice a dy. So now i go see my reg. dr. next and he's going to treat me for the fibro. and hopefully give me something for not being able to sleep. Let me know what u all think, since all of this is so new to me.


  • momof3inCT
    April 28, 2010 at 2:32 PM

    WOW 26 pills, Im so sorry to hear it! I have had lupus for years undiagnoised but offically been treated for 4+ yrs......currently im off my meds due to good blood levels and pregnancy. HOWEVER I agree with others some days it is hard just to get up then when I do I end up on the couch with just extreme exhaustion. All I can say is hang in there and do what you can when you can! When I got diagnosed I came up with a saying for days I couldnt do what needed to get done and I would just say over and over to myself "there is only so much 1 person can do" and leave it at that! People around you family and friends will have to understand and if they dont then it is on them! At least know you have support here!

Lupus (how do you cope)

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