Living with lupus?

diagnosed with lupus some years ago and to be honest still not 100% as to what it is . occasionally get flare ups been on meds for years. try to be positive and work through any bad times. looking for any info or advice.
not a complainer for years i have worked on the principal of positive thinking and mind over matter. some may call it denial.

Hi Michelle, just want to let you know your not alone. I was diagnosed with SLE 5+ years ago, and what a learning curve thats been lol. I have been taking steroids and immuno-suppressants almost from day one.

I try to keep a positive outlook on this,to even when the pain gets awful, I just try to deal with it and then move on, not wallow. I dont get depressed., dont get me wrong, I swear and shout, when I wake up not being able to move, after moving the night before. Thats still shocks me . even now,


I presume you have a good Rheumatologist, my one's lovley, and very patient with me, as I am not always keen to try the new cocktail of drugs lol. If you haven't already, get your gp to refer you to St Thomas's Lupus Centre, they have a fantastic bunch of Doctors, there just for us , but keep your local Rheumatologist as well.

http://www.lupus.org.uk/


Here's IMO a good book, that was given to me when I was first diagnosed. it helped me understand abit better it's called

"Lupus, Everything You Need to Know" by Robert G.Lahita and Robert H. Phillips .

It was also suggested that I join The Lupus Site and Lupus Uk, which aside from a forum, could also put you in touch with any local Lupus groups in your area.etc

http://www.uklupus.co.uk/
http://www.lupusuk.com/

I found these immense help in the early days, and it's great sometimes to be around people who truly understand how your feeling and what your going through. However now adays I tend to not want to continually remind myself that I have it, just want to get on with living,

For the past 6 months infact, Ive been trying to do all the things, I want to do, the things that may make me smile, or be proud etc.I cannot do anywhere near as much as before, however Im definetly doing alittle more each time, and thats a result. and Im going to keep pushing

I take a daily supplement containing Dha & Epa Omega 3, which is recommended for people with Lupus.. I take Selenuim, which helps with the toxins in my body from the drugs etc, and recently a cabby told me about Wheatgrass, his daughter has a auto-immume illness, and was on a good cocktail of steroids etc, anyway they did some research, and discovered this wheatgrass, she is now after using this and careful supervision , drug free.

Please Make sure you ask your gp's advice before taking anything, as some supplements can interact badly with your medication OK

http://www.kipperseason.moonfruit.com/

I can't explain much about it, because Ive only just started taking it,these past few weeks, initially an acquired taste (yuk) it grows on you, but no side effects, so thats great, and to be honest, I'm not looking for a cure, just something to help my body take better care of itself.

My advice to you, is keep up the positive thinking, it definetly helps, Try to do the things that will make you happy, even if it's just down to, having alittle pamper session, one evening a week. big/little things, to help you feel better about everything.
Live is for living, and it short, and it's important that we have quality of life , not just a life existing, I hope you understand

Dont sweat the small stuff, you know stress is bad for anyone, much less those with Lupus.,

Never feel that you can't question your Gp, or Rheumatologist, if your unsure, or concerned about anything, ask them, thats what they are there for, to help you, and empower you with knowledge, though too much can be a bad thing to lol


I wish you all the best, I know how hard it can be, but your always going to be that little bit better off , by trying to be positive.

Take care hun xx

i also have lupus[sle] and i get very bad joint/muscle pain
weakness.and get very tied.all i take is a aspirin for the joint pain.you should goggle lupus.or go to the lupus site on the guys and st Thomas web page that should give you more
information.PS i also get very depress which happens to about
75/85% of people with lupus.and that is the worse part of it for me.and the fact that people with lupus dont look ill. best of luck.lupus actually attacks the body because it think it is under attack.and any part of the body form head to toe can be effected.and the most common feature is the butterfly rash around the nose and eyes.

Lupus is an autoimmune illness-if I had it I would investigate the possible infections that may be causing it-
You have to know where to look to get a second opinion,from doctors who will see the problem from an alternative perspective.See the link for a private hospital below.

Hiya, my sis in law has it, it's to do with the immune system breaking down and results in inflamed body organs and joints, hence the joint pain, also seems more common illness with afro carribean community. Treatment with steroids and anti inflammatory meds.

Left untreated, lupus can cause permanent organ damage. Half of all sle patients have kidney involvement and you will have no symptoms until you are heading into kidney failure. Please see a rheumatologist and learn about lupus www.lupus.org.