Your most bothersome symptoms?

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New Member

Date Joined Jun 2014
Total Posts : 2
   Posted 6/28/2014 6:35 PM (GMT -6)   
I'm curious what others feel are their most bothersome Lupus symptoms.
Pain? Fatigue? Side effects of the meds?

For me, it's admitting that I can't do all the things I used to do. I was diagnosed 8 years ago, and it's still a struggle to monitor myself.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 6/28/2014 10:16 PM (GMT -6)   
Not being about to get out in the sun like I used to. I miss shorts, tank tops, and sandals.
Second one is the pain and swelling.
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Forum Moderator

Date Joined May 2005
Total Posts : 7669
   Posted 6/29/2014 9:59 AM (GMT -6)   
I had severe cognitive involvement for about 4 years - thankfully Cellcept stopped it for the most part. I could not drive, make a grocery list, or plan a meal. I could not take part in a conversation - I'd forget the topic in the middle of a sentence, let alone remember the word I wanted to use. I could not even follow the most basic 20-minute sit-com. Neurophysiology testing showed I lost about 15 IQ points. I lost my contracts, my employes, my business, my livelihood and my colleagues. I lost my ability to run (I was a marathon runner) and all my running and physically active friends. I didn't do any home maintenance in all that time, and am still playing catch-up. I slept and/or rested most of the time.

While, thanks to Cellcept, my mental facilities are probably 95% what they used to be, my life is nothing like it was.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 6/29/2014 1:10 PM (GMT -6)   
I miss the active portions of my life. I used to be on the go constantly. Now, it is so difficult to maintain a balance. My biggest "lupus resentment" is the feeling that for every activity I participate in (sometimes as simple as taking a shower), I must give up something else. Sometimes it is very hard to keep a positive outlook.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies, asthma, GERD
Daily Meds: Plaquenil, Zyrtec, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim, Q-Var, Restasis, Albuterol
Daily Supplements: Calcium, B-100 Complex, Vitamin D, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Tylenal, Vicodin, Prednisone.

Regular Member

Date Joined Jan 2013
Total Posts : 62
   Posted 6/29/2014 8:15 PM (GMT -6)   
I miss my brain processing and my quick wit sense of humor ;)

I also resent having to select A or B when I used to be able to handle both plus C and D
Laura aka tenXmom
AI Hep - AI Pancreatis - Lupus - RA & Osteoarthritis - Reynaud's - Fibro - AIED - TMJ - Sjogren's - and whatever is going on with the gallbladder...

Veteran Member

Date Joined Mar 2006
Total Posts : 2606
   Posted 6/30/2014 7:53 AM (GMT -6)   
Pain and fatigue have resulted in an almost nonexistent social life, and having been an active person all my life is now a distant memory. I'm spending the week with my 3 and 4 year old grandchildren who are the light of my life. My daughter is with me and she keeps telling me to pace myself. I always overdo it when I'm here and then I pay for it dearly when I go home. By now I've accepted that this is my life and I make the best of it.
SLE, fibro, renauds, restless leg?

Regular Member

Date Joined Mar 2014
Total Posts : 167
   Posted 7/11/2014 2:21 PM (GMT -6)   
Anita - I am not diagnosed with Lupus but working on that slowly... my mom had it and the rheumy is the next step for me. My period is almost unbearable - not with the things you would think though. I do get cramps and the normal PMS issues, but I become almost bed ridden with exhaustion, my hands and feet swell up, my bones hurt so badly, especially my lower legs and my left forearm for some reason. Sometimes I lose hearing in my left ear during my period and I have severe ear pain in both ears and I can sometimes see spots in my vision. Sometimes I get a little dizzy too - almost like vertigo. I am experiencing all of those things today but I have to be at work today - no other choice. I have read some recent research on this topic and it seems to be an area of interest for lupus researchers.
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