Systemic Lupus: Need Advice

I was just recently diagnosed with SLE. Does anyone have any advice for me?  Please.  I am on Robaxin and Plaquenil. I am so tired & run down and just hurting. We are talking about starting me on a pain patch. Having an MRI of my hands done soon(for RA??).  Any thoughts for me? Thanks, Lindy

I have Lupus also.   After loosing the weight my pain mangement did improve. 

Hi Lindy!!   I have Lupus and Still struggle from time to time with pain management.  I take plaquenil daily along with a muscle relaxer called soma for fibromyalgia.  I have noticed a signifigant decrease in pain since I have lost the weight.  However, I do have pain in my hands, feet, forearms and occasionally my legs.   I have been applying biofreeze which is topical from that seems to briefly help.  (I have asked; but it does not come in a 55 gallon drum available to the public, so we are out of luck in that regard!!) LOL Unfortunately, I really have not found a "rescue" remedey for those times when the pain becomes REALLY bad.  BUT since I have lost the weight, those times are far and few between!  So keep your chin up, it will get better, you have to grin and bear it for a bit...I KNOW IT STINKS!!!

Another here with lupus.  My only advice is to take it easy.  Listen to your body.  If you feel like resting or taking a nap, do it!  I take Plaquenil daily, and my lupus has been pretty much inactive for about 2 years now.  I know it's scary getting a diagnosis, so hang in there! 

I was diagosed with Lupus 15 yrs ago and hurt like heck. I blossomed up to 300 lbs with all the meds I had to take. After a few years of that my organs started shutting down. My doctor then detoxed me of all of that and we started over on new meds. I now take Humira (an injection yuck!!!!) every 10 days and for my daily regime I take 3 excedrine 2 a day, and drink LOTS of water to keep the joints lubricated. I have been on the Humira for 8 months and I think it is finally kicking in. Getting off all the meds, I dropped about 80 lbs. Still leaves me at 220 way to  much for me. I am not so much interested in WLS as having my breasts reduced to at least DD down from KK, and have a body lift to remove the loose skin from my mid section. Take care and don't get discouraged.

Hello,  Im sorry to here you have SLE. I do as well . I know how hard it is at first. I was diagnosed 13 yrs ago and I just want to tell you there are alot of things out there that can help you deal with every thing . I have to say one of the most important things you can do for yourself is learn about every aspect of your disease and every medicine they try to put you on. see a rheumatologist if possible.  and check them out too.  Remember some doctors dont like to deal with people who have lupus, some do not understand the disease, some dont even believe you have it..... believe me you will run into those. Some will give you a whole ton of pills for every symptom .  thats why it is important to know your disease. Some people describe lupus as a disease in which a body attacks itself , and that is kind of  true. So the next equally important thing.... , And I am so serious about this.... Learn to love yourself ...I know that sounds like I think I know you, and I dont, but I want to explain what I mean. One thing you can do to help keep your physical in check is to butter it up emotionally. With lupus , your body fights with it self. If you pamper yourself. make it a personal goal to do something for your body to show it that you love it every day. Nice hot bath , Exercise, even if all you can do is look at your self and tell yourself "I love you" This isnt a ego pep talk ,it actually changes the chemical reaction in your brain ,it changes the microbial structure of water , our bodies are 80% water. it helps your brain process seretonin, Seretonin triggers receptors in the brain that release endorphins that help slow down the fight reaction of your cells that cause inflamation........ Meditation is excellent to help cope with lupus.  any time you can reduce stress and make your body feel loved you will reduce your flare ups and improve your own mood ...which in turn jumps on the same circle of healing.I also have alot of herbal sugestions and would be happy to talk to you about them or anything else any time.  Good luck with everything ,

Amanda

Hi, I have SLE too, for about 8 years.  I take plaquenil everyday.  Otherwise I try to use mostly homeopathetic remedies.  I would be very interested in hearing about  herbal suggestions.  Thanks Kathy

Hi Lindy ! I'm so sorry  to hear of your diagnosis I know it is scary I was diagnosed 7 years ago and it took 5 different rhumatologist  before someone helped me . I am on plaquinil and i take 8 methotrexate weekly the methotrexate has been a godsend . Hang in there and if your not happy with your doctors dont hesitate to find new ones remember they work for you not the other way around. Good luck don't hesitate to email me if you have any questions.                                                                                      Cindy