Recent Posts

Cindy S.
on 4/23/07 9:30 am - buffalo, NY
Topic: RE: Systemic Lupus: Need Advice
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

 

 

walkat
on 4/22/07 7:05 am - Shingle Springs, CA
Topic: RE: Systemic Lupus: Need Advice
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
Kathryn Stewart

"The true meaning of life is to plant trees under whose shade you do not expect to sit" Nelson Henderson

 

 

 

sagewitch
on 4/21/07 8:45 am, edited 4/21/07 8:47 am - traverse city, MI
Topic: RE: Systemic Lupus: Need Advice

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

sagewitch
on 4/21/07 8:14 am - traverse city, MI
Topic: RE: Lupus amd Fibromyalgia post op??
Hello Missy  I was diagnosed with lupus when I was 30 13yrs ago. It is commonally found in people around that age.mostly women but sometimes men too.I did not have a positive result on my ana test for several years. It was discovered because I was experiencing a high level of inflamation in my blood work. I had alot of problems with my lungs, asthma was severe enough to be hospitalized several times a year.  Im not going to candy coat lupus cause lupus sucks the treatment for lupus sucks and so on but I will say that lupus has not ruined my life . I actually felt a little better when I actually had a name to put on things.  I had a old fashoned gastric stapling twenty five years ago, I dont believe it was related, but Im not sure, I know osteo arthritis can be from vitamin deficiency. I have studied in depth about lupus and I have alot of natural remedies that have helped me alot. Losing the weight ( Im having surg in june) will definately help with joint pain.  In all honestyI have been put on every thing for pain from morphine to tylenol..... I am happy to say most times if I ever need something for joint pain I reach for the tylenol and It usually takes care of it the best. I have herbal sugestions that can help alot. tumeric is good, and ginger tea helps relieve inflamation. good luck to you, amanda 
Amydoodle
on 4/19/07 8:55 am - Vienna, OH
Topic: RE: Lupus amd Fibromyalgia post op??
Hi Missy, As far as I know you can test neg for ANA and still have lupus.  It's not a perfect test.  I saw you just had a baby.  I've had tons of probs since having mine a year ago.  I seem to always have a weird infection--bladder, yeast, sinus...like I have no immune system.  I also ache, have mouth sores, bad headaches, lost a lot of hair...I just started iron infusions.  Still don't feel better.  I feel like my doctor thinks I'm nuts.  I told my husand I felt better when I smoked and weighed 260 pounds!  Anyway, I hope you get your condition under control.  Let us know what's up. Amy
censoredmissy
on 4/18/07 6:12 pm - Mckeesport, PA
Topic: Lupus amd Fibromyalgia post op??
Just recently found out I now have Fibromyalgia, Degenerative disk disease, Osteoarthritis and possibly Lupus, will know lupus results in a week. Anyone else dealing with these types of painful, dibilitating diseases? Since we are unsble to have so many of the medications usually pescribed all the NSAIDS would be interested in knowing what u all are taking and if it helps! BTW im only 31!!! Here I thought getting surgery would make me healthier, lol...hmmmm.... Missy post op 08/2005 Lost 175lbs so far Mommy to a 5 month old baby boy!
TonyaUtah
on 4/13/07 1:05 am
Topic: RE: Systemic Lupus: Need Advice
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.
StacyH
on 4/3/07 9:24 am - Los Angeles, CA
Topic: RE: LAP BAND IN FLORIDA
Hi  I don't live in florida but I do know what it's like to have Lap Band surgery and Lupus.  I'm lucky to say that my lupus is under control and does not affect me on a daily basis.  I had Lap Band surgery 1/19/07 and have lost more than 25 lbs so far.  It's the BEST thing I've ever done and I'm so glad that I took the first steps. Good Luck! Stacy
lolly1206
on 3/31/07 7:47 am - Blackstone, MA
Topic: RE: Systemic Lupus: Need Advice

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! 

Lauren

Start: 281  Low: 123 Now: 139

(deactivated member)
on 3/30/07 11:48 pm - Naples, ME
Topic: RE: Systemic Lupus: Need Advice
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!!!
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