View Full Version : ELLIE'S INTRODUCTION TO THE GROUP
04-02-2008, 05:52 PM
Hi --- I'm Ellie, and have been diagnosed with Lupus for a little over a year. I also have several other auto-immune diseases, including Sjogren's, Raynaud's, MCTD, etc. I have moderate arthritis, meaning it hurts quite a bit, but isn't debilitating.
I am interested in learning about the flare-ups. I had one last week, with low grade fever, body aches, headache, etc. How often do these occur, and how long do they usually last? The only place I was relatively comfortable was in my bed, which is no fun!
Also, do most people with Lupus also have Sjogren's, Raynaud's, etc. The Raynaud's is so bad that I have a blister on my bluish purple toe, and am having difficulty wearing any type of shoe.
Now that I've finished complaining, I'd like you to know that I am basically a happy and optimistisc person, in spite of the health difficulties. I have triplet grandchildren (just turned 7), who live about 15 minutes away from me, so when I am feeling good I like to go to Little League games, swim meets, etc.
This September I will have been married to my highschool sweetheart for 50 years. I just turned 70 on Jan. 29th --- can't believe I'm that old!
I'd love to hear from all of you. /Ellie
sick n tired
04-02-2008, 08:11 PM
Welcome to the forum. This is the place to go for some support.
I am in a flare right now. I do know that everyone is different with this illness. What might take you a week or two the next person is saying that they have been there for a month. Some for even many months.
I am so sorry to hear about your raynauds. That is so painful. Hopefully when the warmer weather comes you will have a repreive from these painful sores.
I am 46 years old and have been married for 25 years. I just became a grandmother this last Friday. I am glad that you are able to spend time with your three grandchildren.
Well I am glad to have met you,
04-02-2008, 11:09 PM
Karen: I first became a grandmother at the age of 47, and I am SO grateful that I didn't have Lupus then. I was able to move around, teach school, etc. When you have a flare, what are your symptoms?
Thanks for welcoming me into the group!
04-03-2008, 02:00 AM
Welcome to this site. I too am fairly new and am on a big learning curve about SLE, Sjogrens aand all the symptoms and difficulties I may (or may not) encounter. So I don't yet feel qualified to offer much help with flares etc.
I'm 48 and my eldest daughter has just started at to study medicine at University and my son is 16 and still at school. So I think I'm nowhere near to being a gran yet!
I'm so glad you said that you were optimistic and happy. I'm also not someone who likes to complain too much .......I think complaining annoys me more than it annoys anyone else 'cos it tends to drag me down. BUT that is why I think this site is fantastic. You have permission to complain and the bonus is you get so much support and positive advice that it actually turns the whole thing around!
Congrats on being married for 50 golden years!
Congratulations Gran! Hope you have lots of love and fun with your new little one.
All the best
04-03-2008, 05:23 AM
Iam in a big flare right now to. Ihurt in my lower back, legs, feet, headache, depression, hands and ribs. Ican never predict when a flare is going to end. when it goes Its such RELEIF. Iwas diagnosed in july with rh. autoimmune hep. sle, fibro, I also have post trumatic stress disorder.
I keep a postive attitiude as much as i can. depression seems to hit me worse during a flare. I have 4 grandchildern, they live in northern wisc. I live in louisiana. Imiss them every day.
04-03-2008, 07:50 AM
Hi Ellie :lol:
Welcome to our family. You've already seen how responsive, caring and informative our members can be.
As they have mentioned to you, there is no way to predict when a Lupus flare will occur, how long it will last or what symptoms will be involved. Every person's lupus is different and affects them differently. The best that we can do is to take every step, measure and precaution in order to avoid flare-ups.
I do not think that there are any of us who suffer with Lupus alone. Almost all of us have some form of overlap illness. Myself, I have Lupus, Fibromyalgia, Raynaud's Syndrome, IBS, TMJ and a few others! So, yes, what you describe is quite common :? I have to sit with my feet in a heating pad when I am on my computer, I keep a heating pad at the foot of my bed to help keep my feet warm. I sit with my arms folded all of the time (to keep my hands underneath my arm pits so that they will stay warm) and I often drive with gloves. What helps me the most is exercise, I find that doing some form of exercise helps to circulate the blood to those parts of my body that are affected by my Raynaud's.
I am glad to hear that you are optimistic and happy. That is very important and extremely helpful when fighting these illnesses. I wish you the very best and continued happiness. Also, we are here for you to help you navigate through this disease. You may come to us at any time and there will always be someone here to help you. Again..welcome to our family.
Peace and Blessings
sick n tired
04-03-2008, 10:26 AM
At the moment I have lupus, fibromyalgia, ibs, barretts,and tmj. The flare that I am currently trying to climb out of is very painful. My grandbaby is 6 lbs 1oz and It kills my right arm to hold her. I do it anyway, though. I have gerd and that is always worse when I am in a flare. I end up throwing up often. I am super exhausted, but have a hard time sleeping. (Not sure if the sleep thing is because of my pain as much as worry) I have a daughter who was diagnosed with a mass in her chest. I wrote about it in another post. we still have no answers what is wrong with her or how to proceed. I get really scared when I think about the unseen enemy.
Of course, i am sure that you know stress makes these things worse. that is why I have been thrown headfirst into this flare. The pain in my right arm, and lower back, my feet is almost debilitating.
Saysusie, I sit with my hands under my legs at times. Bending my right arm means that I will be unable to straighten it.
04-03-2008, 11:20 AM
I'ld like to add my voice to the chorus of welcomes :) I'm not diagnosed yet but hoping to get sorted out soon.
This is a very friendly and supportive group of people. Glad you found us.
04-03-2008, 02:29 PM
So happy you found our little corner of the world. As others have stated, the flares are different for everyone...and they can be different every time. You have not mentioned whether you are taking any meds, but certain meds can help with the frequency and severity of flares and overall symptoms. In my experience, having the big "L" is like waking up in a new world every day. So, a positive attitude generally helps dealing with the unpredictable aspects of lupus.
I wish you the best. Children (I have 4) and grandchildren (none yet) do make all things seem better, don't they?
04-03-2008, 03:46 PM
I am adding my voice also. Welcome. This is a great support group and it's nice to talk with others who are experiencing the same issues.