How has your life changed?

What has been the most difficult part to adjust to?

Hello, I am unavailable to read your message at this time.

The most difficult for me to adjust is the fact i’m not the same person any more. I don’t have the energy i used to have, not knowing if i can handle
what has to be done that day and getting used to being in some sort of pain each day. I find it very hard to plan things because of this.

Stephanie Vinson

I was diagnosed with Systemic Lupus in October, l992. I was diagnosed with Fibromyalgia about six months later. At first SLE did not really cause me very many problems. I have been taking Plaquenil since I was diagnosed. In the last year I have been having a lot of problems with Chronic Pain which my rheumatologist does not seem to treat very aggressive. I take Ultram three times a day for pain but it no longer seems to be enough. I have tried to get my rheumatologist to give me something else for pain but he has refused. I went to a second rheumatologist a couple of weeks ago for a second opinion. after my blood tests came back he told me that I should stay on the same medications. I feel now that SLE has ruined my life. Although I am still working full time, it is getting harder and harder to continue. I have gotten to the point where I have begun to pray every night that I do not wake up in the morning. Life just does not seem worth it.


Hi Lupy!

Totally understand where you are at feel free to write if you need someone to talk to!


I’m actually quite new to all this. Not new to the problems of fatigue,
arthritis and painful joints, but new to it possibly being Lupus. You sound
at your wits-end, which I can soooo understand. I thought I might suggest
Yoga as something to consider. I was doing Yoga for a while but quit going
last summer. I’m going to start up again. I think we need to tackle our
situation from a mind, body & soul perspective. I don’t mean religious so
to speak but more of a peaceful well being. Yoga is not meant to be hard or
about pushing your body. As a matter of fact you shouldn’t push your body
at all. Everything you do in Yoga should be about being kind to your body
and self. Give it some consideration. I hope tomorrow is a better day!

Take care!