HealingWell
Search Close Search
☰

Your most bothersome symptoms?

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/29/2014 12:35 AM (GMT 0)
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.
Posted 6/29/2014 4:16 AM (GMT 0)
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.
Posted 6/29/2014 3:59 PM (GMT 0)
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.
Posted 6/29/2014 7:10 PM (GMT 0)
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.
Posted 6/30/2014 2:15 AM (GMT 0)
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
Posted 6/30/2014 1:53 PM (GMT 0)
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.
Posted 7/11/2014 8:21 PM (GMT 0)
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.
✚ New Topic ✚ Reply