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Posted 9/17/2007 12:26 PM (GMT 0)
My name is Joy and I am 35. I have been ill for quite a while now...but I have not been diagnosed with Lupus (as of yet). My symptoms started several years ago after my 1st child was born. My hair started falling out in large amounts and i was tired all the time. Dr. said "welcome to motherhood". He said your body goes thru changes and this is normal. I was like that for a while and then it went away. Over the years other things are happening.Everything seems to go in shifts. I never have the same things at the same time....does that make sense??

My hands and feet are always a problem for me ...either they are itching and burning and red and hot or they go to the other extreem where they are cold and cramped alomost to the point i cant stand it. Sometimes my body hurts so badly. It isn't one specific part it is everything. I try to explain it to people and they look at me like i am nuts. It is like my bones are being pulled out of my skin. My husband tries to rub my body to help me and i have to tell him to please stop cuz my "skin" hurts...does anyone know what i am talkin about??

Lately everything has gone hay wire. I have awful headaches and now i am forgeting things....i mean really forgetting things. I am afraid to drive with out hubby cuz a few months ago i left for the store and got lost. I was horrified!! I have lived in this town my whole life. My anxiety is thru the roof---Oh Lord---there is too much stuff to even try to explain...not to mention i feel like a hypocondriac.

I am sorry for the book. I wanted to let you all know who i am and what my story is ....and it ended up as long as a story (lol) and it's only part one. Thanks for your time.

Joy

Posted 9/17/2007 1:04 PM (GMT 0)
Welcome to the forum Joy, I hope you make a couple good friends here and I hope we can help you make sense of some of your symptoms. Writing and reading here really seems to help us define our symptoms. Make sure you start keeping a symptoms sheet or journal. You can dedicate a calendar to this or use a notebook or even open up some notes in "notepad" on your computer . . . but keep writing things down. When you see someone here explain it well, copy the words and add it to your notes. If you can define your symptoms, what causes them and what relieves them, it will really help the doctor. Of course, most of us can't figure out what relieves them!! That's the biggy. I don't know a lot about fibromyalgia, but it is a REAL disease and when you described that even your skin hurts, it raised a big flag for me. You may have fibro plus another illness. The hands and feet are big issues for those here who have Raynauds (causes cold hands and feet because of poor blood flow . . . it can be quite serious). You'll notice that some of the members have Lupus and one or more "overlap" diseases like Ranyauds, Hashimotos, Fibro, etc. Most of these overlap issues are also "autoimmune". Lupus is autoimmune which means that our immune system attacks our own healthy tissue. There are some good links at the end of my signature if you'd like to learn more about Lupus. There is a reply in "Lupus Resources" which gives lots of good suggestions from all the members here. Having a baby is a big stress on your body and it really can cause a "flare" in disease activity. That may be what you experienced. When you say things go in shifts . . . that is probably disease flares. I'm sure the others will be by to say hello. Blessings!
Posted 9/17/2007 1:19 PM (GMT 0)
thankyou for the reply. I will look into the things that you mentioned. I don't know much about any of the illnesses...i just know it is something. I think what you all call flares is what i have been calling episoids. I never knew anything about Lupus until someone from church had mentioned the name. I had missed a Sunday service because i was sick,yet again and 2 ladies came from church to visit me. I had very bad aches and pains, a migrain and a rash on my face. One of the women said her daughter has Lupus and the rash on my face is the same thing she gets. She asked if i had some sort of sores anywhere...i told her yes some type of boils...she said her daughter gets the same thing when she is going thru her episodes. I googled Lupus and ended up on this message board. It has been so helpful reading all the information and posts. Thanks to all of you! I hope to find an understanding group of friends here (lord knows i need them).

Posted 9/17/2007 1:33 PM (GMT 0)
That is funny because I listed my symptoms in a Google search and came up with Lupus too. That is when I started telling the docs about symptoms I didn't even realize "mattered". The name AlwaysRosie is because my cheeks are "always rosie". LOL Make sure to take pictures of your malar rash and the boils. If you get mouth or nasal sores, try to get pictures of those too. Some here have taken the pics to the doc appointments and it was helpful in diagnosis. The docs don't usually get to see us when we are having these symptoms and by the time we get in to see them, the issues may be gone. Blessings!
Posted 9/17/2007 1:46 PM (GMT 0)
Hi Joy. I also wanted to welcome you. As I'm sure you can tell by reading the posts here, this is a great forum where we really support each other and try to help each other out as much as possible. I'm sorry you've been so sick and that you still don't have a diagnosis. IT's sad, but so many of us have had to go through years of being sick before getting a diagnosis. It can make a person feel a little crazy at times and it is very frustrating. Try not to let anyone make you feel like a hypochondriac because you aren't. These things that are going on with your body are very real. From what I have read about lupus, many women will go into a flare after childbirth, so your symptoms make sense. I always get frustrated when I hear docs say that symptoms are because you are a mom and you are going to be fatigued. When I initially got sick, that's what one doc tried to tell me and I knew my symptoms went beyond the usual fatigue and stress of being a mom. I was also thinking the same thing as Rosie about some possible overlapping illnesses too like fibromyalgia or Raynauds. If you can find a really good rheumatologist, they will hopefully be able to help you sort this our and help with a diagnosis and treatment. Has your doc run any tests yet? Hang in there. It can be a long and frustrating road to a diagnosis, but you are among people who have been there and know what it is like. Ask any questions you have. Take care and I'm glad you joined us.
Posted 9/17/2007 7:58 PM (GMT 0)
Hi Joy,

Adding my welcome as well. Like Rosie, I immediately thought of fibromyalgia also when you mentioned about your skin hurting. I agree that seeking a rheumatologist will be your best start. Making a list of all your symptoms is important also so you can be sure not to miss anything. On my first rheumy appointment I had to ask the lady if I could just attach a copy of my list to the paperwork because it was just too much to rewrite. I'm glad I did though because my doctor had the full picture and he thanked me immensly for being so thorough. I hope you can get some answers soon. Please let us know if there is anything else we can help you with for your appointment. Sometimes the first appointment can be a little intimidating and we are here to help you.

Take Care
Posted 9/17/2007 11:30 PM (GMT 0)
Hi, Joy and welcome. You have found a great group of people to talk with about the problems you are having. What you've described certainly sounds like symptoms of some type of auto-immune disease. Some of them do specifically sound like lupus, but there's no way to tell exactly without the appropriate blood work. You may have an overlap of 2 or more diseases as many here do. I agree with what's already been said about trying to get referred to a rheumatologist so they would know how to test you and I think they also treat most (if not all, not sure?) auto-immune diseases. I started keeping a journal of my symptoms right when I was diagnosed. You really have to keep notes of everything because if you do have lupus, your disease is systemic and it does make you feel like a hypochondriac effecting SO many different areas of your body! Please take care and I hope you are able to find the help you need.
Posted 9/18/2007 12:23 AM (GMT 0)
Thankyou all for the warm welcome. I am so thankful for finding this board. I will make a dr appt as soon as I can get on my husbands insurance. Thankyou all very much!!

Posted 9/18/2007 12:49 AM (GMT 0)
Hi Joy, just a quick note to say Hi and I'm glad you found the forum. I hope that you can get to see a good rheumatologist and that your PCP runs the right tests for you and gets you getting well. If worse comes to worse and you can't see a rheumie, if you have any osteoarthritis they can refer you to a rheumie for that. That's how I got referred, that and ANA. Well, I hope you are feeling well and look forward to hearing from you soon.
Posted 9/18/2007 7:29 PM (GMT 0)

Just wanted to say hello to Joy.  Sounds like a possibility of Lupus.  Usually those butterfly rashes are dead giveaways.  The suggestions made about making a list of your symptoms and diagnoses and getting tested for Lupus would have been my advice also.  I hope that you can get to a rheumatologist to help you sort this out and help you make sense of it all.  This site will help a lot.  I finally feel normal here and others have the same weird symptoms I do.  It is very comforting and everyone here are great people too.  Don't get discouraged if it takes a while to get a firm diagnosis.  Sometimes that happens with these types of diseases. 

Please keep us updated on your progress.  Take care - Hope to hear from you soon - Kristin

Posted 9/18/2007 11:24 PM (GMT 0)
Joy,

Welcome to the forum! I'm sorry you're having difficulties and hope you find a good doctor real soon. This forum has been a godsend to many of us and I for one don't know how I would have managed without the friends and support I've gotten here.

Hope to hear from you again soon.

Pat
Posted 9/19/2007 11:08 AM (GMT 0)
Hi Joy,

I just wanted to add my welcome to the others. They've given great advice. I didn't stumble onto this board until after my diagnosis but wish that I had! I hope you get to a rheumatologist soon and get the appropriate blood tests so you can get the information you need to figure out how to deal with your difficulties.

People here are fantastic!

Stay Strong,
Sue
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