Hello, Im new here just got diagnoses with Lupus wanted to talk

Hi,

   I just wanted to talk to others who have Lupus and get a idea of what is espected.

Heres my story. about Mid June I started getting strange pains in my ankles and calf. Then really bad stiffness and pain in both knees. I couldnt hardly move. I went to the doc and she did some blood tests and gave me a 10 day dose of pretizone, and Ibprofen it did the trick. After 2 days all pain and stiffness went away. Then the very next day after I had finnished the meds it all came back even worse then before. My sholder, elbow, wrists, fingers, knees, ankles,and toes stated to swell and some days were better them other for pain but with a family to take care of and working I was so frusterated becuse even the easiest of things seemed so hard.

  Finally Yesterday I was diagnosed with Lupus. 4 Blood tests they did came back with high numbers. He said my blood was clotting.. Since the onset of pain I have moved from Colorado to Arizona. It is either the change in weather or im in remission. I have almost no pain and mild fatigue and depression. I have researched Lupus and it seems im ok and it wont get any worse. But on the other hand ive herd Horror stories so I thought I would look for some real anwsers here. Please tell me your stories. How it started. How it is coping. What meds are good/bad. Anything would be helpful...

 Thanks for listening......

Dx.sle ra, after birth of 2nd son,1986.Left 1st husband in hurry due to some pretty horrid things.Oldest still in wheelchair,other little and acting out,me ready to jump off cliff.MY experience is sle is a complete rollercoaster ride. I am glad to hear you are doing better,My best advice is learn your body well,your triggers, and know when to slow down and rest.(easier said then done,I know after all this time I still ignore it sometimes,and pay a pretty price.)Read,stay informed about your dx.read the spoon theory,just google it.Try and have a rest period each day, like in kindergarten with your little rug,if possible,Be really honest about what you can do and can't each day,believe me the housework will wait.some days you won't be able to type and can't participate in this forum. It's all okay. Hope this helps. God Bless,Namaste Raven1954.

 hello I am new here.  I have systemic lupus and have for much of my life got a firm dx this month when I went into a severe flare up.   two months on predisone and 9 weeks on antibiotics.  Kidney, liver, heart, lung,involvement plus RA and light sensitive ,muslce spasms and trouble sleeping    lupus will realease awake chemicals at betime for reason known only to lupus (the great imitator)  I also experiencing lupus haze  so I get confused very easily and depression, lonliness and a feeling of isolation.  Grateful for each day and remember I am 72 so it took a long time for things to get this way.  I look forward to to tomorrow and I believe I will go into remission once again.  i think sharing is good as you have hope and that is important to gaining stabillity.  wish all a speedky remission.

Mkayla,

It's good to hear another story of someone whose lupus has gone into remission. My story is similar to yours. After a long 2 year flare where I couldn't get out of bed, I slowly began to improve, and now, 5 years later, am nearly my old self again. I've had to slow down and listen to my body so I don't overdo it, but life is so much better. You asked about meds. I've tried so many-methotrexate, imuran, cellcept- and now leflunomide seems to be the one that has helped the most. I'm also on plaquenil and prednisone. We all react differently to meds and have to find our own combination that works for us. I'm happy to hear that your move to Arizona has been beneficial to your health. I hope you're still under the close watch of a good rheumatologist. You don't want to flare without being under the care of a rheumy. Stick around. We need to hear from folks like you who give hope to others who aren't doing so well.

Birdlady, your post saddened me. Do you have a support system? Lupus can be so isolating and I hope this forum can become a safe haven for you. Don't give up.....many of us have improved, and I suppose we older folks have the luxury of taking better care of ourselves since we aren't working and running after little ones. Do you have good doctors? My depression has been helped immensely by an antidepressant. I ran out a couple of weeks ago and didn't take one for a week, and suddenly started crying at the drop of a hat and having real negative thoughts. Soon after I got back on it, my mood improved. I hope you'll join us here. It's such a safe place to say anything you want, to talk about loneliness, and to make friends who understand exactly what you're going through. Hang in there.

Sandys mom and Raven, I'd also like to welcome both of you to the forum. Have to run. Will write more later & hope to hear from you both. Please start your own threads and tell the group your stories so we can get to know you better.

It's nice to welcome new people to the forum.

Pat

 Hi hippumom2, Patty Latty, and the rest of you lovely ladies.  I am so thankful I foound this site.  Now I know that I am not alone [nor are any of us].  This is all so amazing to me as I really knew nothing of systemic lupus.  I believe that this will subside soon.  I have horrendous muscle spasms to the point I have fallen.  I hope that those abate soon.  Sleep is a problem have you had that problem?  I am obviousy getting some sleep or I would not be here.  I guess I get 20 to 30 minutes every 2or 3 hours at night and I am awakend by the muscle spasms.  I have a very high threshold for pain but these are really severe.  I had the pleurisy attack and that is clearing up Dr. is sending me for chest x ray Monday then after a few days possible follow testing for histoplasmosis.  I try to stay active I have a aviary of about 30 cockatoos and amazon parrots puls a few conures.  Plus I live on 1.3+acres in Florida [not complaining] have fallen behind on the yard work [fences to mend overgrowth to remove etc]  Always been very active at home but not so much anymore.  I also look after my brother [lives in another city] who is a schizohranic that can be challenging.  My support system is {here on the computer, my Dr. his nurse and staff and I am a very religous person, plus my best friend and her daughter who sadly face challenges of their own but when my beloved Doberman Salsa died they were here in the hour and (her daughter) buried her on the property next to the fish pond.  Few people know of my illness .... just that sadlly when they would ask if I could help I woud preface it with If I can.  I am sure you all know how that one feels.  So people drift.  However this forum is a blessing.  I do not know what treatments I will receive due to the condition of mly heart, liver, kidneys, etc  he will be cautious. I have faith in him as he has treated me for close to 20 years now.  He was just a young single Dr. when we started and he and his staff call my their Mrsxxxxx. So yes I guess I do have a support system if I take into accord all the things I have written .  Be happy. and Thank you for being here.

 

OMG,

  Thank you to everyone who replied to my post. I am so thankful for your advice. My doc said it was ok but not the best because I thought I was going to have RA, We were both shocked when it came back Lupus... I researched it online and still I felt like it was not so bad especially since the pain is almost I was taking strong pain med till I moved and a month later im almost myself.. I fear that if I don’t get my weight and all over health under control it will give the lupus ammunition to use against me in a flare form... so im really trying hard to focus. I need to be my best for my family and future.

  Now I have a place to come where I can let my guard down and understand what is going on with my body I feel a lot of relief. It’s not all ok and it can be worse so I will just have to live everyday the best I can. So thank you all for your support, advice and for sharing your stories...

Well some time has passed since I last posted.  I hope this finds all feeling better or holding their own.  The recent flare has still not lef but is abating.  Weak as a newborn kitten, my body is so sore from all the muscle spasms it is hard to walk.  I use a cane when I am out but here at home I just hang onto the firniture.  My Dr. said to sleep whenever you can....a privelage that younger people whao are employed or raising children do not have.  I do not envy you.  When I was younger and working the flares would lead to unemployment  and marital problems.....but I am 72 and things were so different then.  I try not to be angry as that is not a nourishing emotion unless it gets one moving again.  Anger can be a motivator as long as it does not dominate ones' outlook on life.  My best to one and all.