Dealing with LupusDealing with Lupus / General Discussion

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bab04

posted to General Discussion in Dealing with Lupus
on Nov. 28, 2007 at 1:00 PM

  • 4 Replies
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I am 28 years old and I have 4 children ranging from 10 years old all the way down to 11 months.  I am having a really hard time coming to terms with the idea that I am going to have to deal with this crazy thing called lupus for the rest of my life.  I am tired the majority of the time and I can't hardly stand it.  I feel as if no one in the world knows what I am going through.  I try to talk to my husband and I feel as if he thinks that I am blowing everything way out of proportion.  I had a positive ana test and the doctor told me that I have lupus.  Beyond that I only know what little bit that I have read online.  Half the time I don't even feel like getting out of the bed, my body aches all the time and sometimes it is all that I can do to pick up the baby.  PLEASE PLEASE somebody tell me what I am in for and that it will get better, I just need to hear it from someone who has been there.  The sad part is that I look perfectly healthy and I think everyone thinks that I am just being lazy.....I am NOT.   I SWEAR IT!!!!!!    How do you make people understand what you are going through without it sounding like you are needing sympathy???
Written by on Nov. 28, 2007 at 1:00 PM

Replies:


  • nandonana
  • by on Nov. 28, 2007 at 1:41 PM
  • hi i am so sorry that you was diagnoised with lupus.i am 49 yrs old and diagnoised in 2002. but things got bad in 2005. besdides your medial dr you need a rheumatologist.ther are a few treatments out there for lupus, sometimes the side effect of the meds is  the worst part.i suggest that you do researh online. when you see the dr take your husband with you so the dr can explin to him him what lupus is and what to expect. i took my hubby and kids with me and they all aware of what is going on.and are able to help.i am here if you need to chat or any advie..
  • soyfulliving
  • by on Nov. 28, 2007 at 1:42 PM

  • What other symptoms do you have?  I was diagnosed with lupus 10 years ago.  I also have the fatigue.  I have joint pain, get pleurisy every year as well as pneumonia on an annual basis.  I was in remission for almost 7 years.  I am 33 with 3 children and am very actively involved in every aspect of their lives.

    Yannah

    Simple. Natural. Pure. Mineral Makeup Group Owner
    Balanced Hormones Naturally Group Owner
    Broken Arrow Moms Group Owner

  • bab04
  • by on Nov. 28, 2007 at 7:14 PM
  • my symptoms are joint pain, fatigue, any part of my body exposed to sunlight developes a rash, and also I have started losing my hair, and I can't seem to remember anything(don't know if this is from the lupus or from having 4 children)
  • patastini
  • by on Apr. 8, 2008 at 8:24 PM
  • Hi:  I have just joined the group because it has become evident thru tests that I have Lupus, and I really want to know what to expect.

    I have quite a few medical problems and have had some real frustrating issues since Christmas, when my legs at the calves began sweling and turning red.  My family dr. sent me to a vascular surgeon, who did the venus reflux procedure because of the veins.  I had 4 out-patient surgeries, each 1 week apart in Jan & Feb.  My let leg has done really well, but my right one is getting really bad again--has some sores that don't heal (I have even been to a dermatologist for that), red swollen calf, knot/ridge, & leg so hard you cannot pinch any skin.   I have been going to a rheumatalogist for severall years, but my blood work has always been okay, I think borderline at 114, but last week, my family dr., did the blood work again, and this time my ANA was 245.  I am totally dumb knowing what is a good number and what isn't, but I am sure I will find out.  My blood work last June was the 114 ANA, and as always, everythng else was fine.  I have had arthritis for quite awhile (years), have poly-neuropathy, both knees have been replaced, but are fine now.  I am fatigued and of course have the joint pain.  I take Celebrex, Methadone, Soma, Allopurinol, Effexor, & Wellbutrin.  I do not sleep well and the rheumatologist has given me Ambien & all the other sleep meds, but they don't seem to help.  I also have Restless Leg and take Mirapex.  I try to remain cheerful, happy, and I am always better mid-morning to about suppertime, when I just wilt.  I have a very, very supportative husband, who relly does a lot and is super concerned about how I feel.

    Does this sound familiar to you all?  I will see my rheumatalogist tomorrow too determine what plan to go with for now.

    I hope to hear from someone from this group who can actually tell me I am not crazy.  Oh yes, I have fibromylagia, also.

    I look forward to hearing from y'all. . . . . .Pat

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