Affects of lupus

General
1

Hello all. Thanks for your help in my project so far.

  1. What areas are the most impaired that your lupus affects in your life?
  2. What areas are the most impaired that your lupus affects in your body?
2

1- social staying in out of sun. Pain an fatigue you miss a lot. Telling people you love to make outdoor plans without you
2- skin rashes, joint pain, fatigued muscles

3

2- walking is hard some days. Having to rest after showering. Not being able to enjoy a meal. Chewing causes aching in my jaw

4

  1. For me,it’s mostly social. I can’t really make plans with friends or family because I never know what each day will bring. Also I had to quit my job and I’m forced to stay home instead.

  2. Mostly joint pains and memory loss. If I’m having a conversation with someone I literally have to get them to repeat things a couple of times in order for me to process exactly what they are saying. But I also have really bad back pain. I have inflammation in my brain and spinal cord, so this affects a lot of my body.

5

1. There are days I haven't wanted to get out of bed at all. Some days I can't manage the stairs (up OR down) without significant help. There were times before I was medicated that holding a water bottle hurt too much. There have been days I simply slept all day, waking only for bathroom breaks, and STILL slept that night. I have hobbled through grocery stores because I over-estimated how much walking I could do, and ended up in more pain than I could communicate.

2. The two worst areas for me are my hips and my hands, though when my shoulders get into the mix with my hips, it's pretty bad as well. There are times when I can't do anything at all with my hands... they are too hot and painful to manage anything but laying them across something cool. There are times when one or both my hips hurt so bad, I can barely limp across the room.

6

Walking and my hands and wrists hurt so bad I can’t hold on to things

7
  1. My hip and my back typically hurt the worst but it really depends on the flare. I’m now starting to have memory loss which is new.
  2. Same
8

The fatigue for me is a social life killer. The joint pain is sometimes debilitating. Not Being able to swim in my own pool or hang out at the beach really makes me sad. I used to love the sun & beach. I still go, but only in the shade, but it’s not the same. Also I used to exercise frequently & anything more than yoga is impossible. Even yoga makes me feel like I’ve ran a marathon. The skin rashes are embarrassing & sometime extremely painful. I suffer from awful headaches as well. Let’s put it this way… I have mild SLE & discoid lupus & I NEVER EVER feel good! This is just the tip of the iceberg that is lupus for me. Many other people have it much worse.

9

Lupus affects EVERY part of my life. I have debilitating arthritis and have no cartilage between the bones in my knees and ankles. I have joint pain everywhere. The fatigue, alone, can be debilitating. I have nerve damage in hands and feet and no longer feel very hot temperature like other people do. I have taken more drugs than I can remember. i am currently on 15.
I would say that Lupus affects my joints the most. Like others have said Lupus greatly affects work and how seldom I socialize. Often I can go for days without really feeling “well”.

10
  1. My social life has been hit the worst. My friends hardly ever call anymore. Life is lonely when I used to have a ton of friends and invites to parties and get togethers while now, I’m home mostly to myself. It amazes me that “friends” actually do this! I would never leave a friend alone who was chronically ill. So sad how people really are! Some family members aren’t much better. I am on disability because I can no longer work which has greatly affected our finances too. It’s such a disappointment. I wish it was possible to have a flexible job that you could work when you felt good enough to. LOL. Only in a dream world.


  2. My joint pain is the worst part as it affects my mobility and ability to do things. Also the fatigue is very debilitating. However, I have been doing much better from prayer and IVIG.
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1. The sun and florescent lights really hurt me bad !!! I can't stay in a store for more than a few minutes.....so shopping is a thing of the past for me.....and working out in the yard and flowers is a thing of the past for me...................................... so being a prisoner in my own house and the social aspect is the big thing for me.

2. All of my I.B.S. digestive problems from the lupus and the meds is a big problem and just the various daily symptoms and the fatigue and weakness is rough.

12

My life… I just turned 28 and I feel like I’m and old lady( no offense is meant). I have to write things down or I forget and even then I might still forget. I often lose my train of thought (esp in the middle of a sentence). I often feel like I’m just floating by either with the brain fog of from the fatigue. This is the second week I have been off prednisone and I feel it. I was able to go to the gym once or twice a week, now I’m happy I think I can make it to the gym after my nap. My best friend tried calling me earlier and actually apologized in her voicemail if she woke me up from my nap because it was about that time. It’s been a big adjustment and I’m still coping working with it. But my life is completely different now then it was.

13

Hello Collegekid09 Let me tell you how lupus has affected my life. August 2005 I lost my right to lupus(anti-phospholipids) I have to take blood thinners for the rest of my life or my blood will clot that’s how I lost my eye. The nerves and muscles in my body are not working properly my left side of my body is larger than the right. Why I don’t know. I have tried to have a relationship but they don’t work because they don’t understand lupus and most women want a man to provide for and with them. I totally understand that and I respect that also so that is how Lupus affects my Life. I hope I was able to help you out a little. Take care and I hope you do good in school.

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1. That I can't be on my feet for very long, so I'm am limited to working a job where I am sitting after 30+ yrs working on my feet

2.My feet

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  1. My career. It’s gone. After 35 years of being a successful executive I can’t even work now. I’ve tried to find an easier job I can handle but I’ve got the stigma of being “too old” and “overqualified.” I don’t know if I could do any new job though, how can I learn something new when I can’t remember anything?
  2. My stamina. There is none.
16

Lots of women feel lupus caused or contributed to their loss of relations and marriage. Curious to me

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Loss of the spunk, enthusiasm and energy I once had.
Walking…feet and ankle joints on a daily basis. Also photosensitivity. Also stamina.