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Thread: Looking more and more like Lupus...what can I do?

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    Default Looking more and more like Lupus...what can I do?

    Hi there!
    I am new to this board, and there is so much to say and so much to learn, but to make it as easy as possible, I'll just kind of throw it all out there.

    I'm a 32 year old married mother of one. I'm a cancer survivor(thyroid), and have been dealing with chronic fatigue and pain for a long time. In my teens, I was constantly tired. My parents chalked it up to iron deficiency anemia, which continued throughout adulthood, until I had a hysterectomy in '06, followed by two seperate oophorectomies for precancerous masses.
    The exhaustion never went away, and the pain and inflammation, which has been in my joints, has just gotten worse. There are days I cannot walk because it hurts so badly. I just want to cry, and what is worse is that I am one of the many people in this country trying to make it with no health insurance.
    I was tested about a year ago for RA, and that came back negative. My mom has Fibromyalgia, and says that what I am dealing with is very similar to what she goes through. I have great days where I am full of energy and can handle doing all kinds of stuff, and then there are days where I just can't wait to crawl back in bed. I have the tender spots typically associated with Fibro, except that I have also developed kind of a scaly rash on my elbows in the last year and a half, and my face is almost always bright red, in the typical butterfly rash pattern. The only thing that has helped with the rash was when I was on prednisone for what was assumed to be poison ivy. I had never had poison ivy before in my life, and I was a kid that played in the woods. I'm also light sensitive. Too much light gives me horrible headaches.
    I was recently diagnosed with Premature Ventricular Contractions. The symptoms for this just showed up this past spring. With my thyroid cancer, it was simply a thyroidectomy. No radioactive iodide ablation, and no chemo or radiation. I was stage 1. And because of my age, I am not only on thyroid hormone, I am on estrogen as well. I know the first step in finding out what is wrong is probably to have an ANA done. I'm saving up money to pay for it, and have filled out paperwork for the healthcare assistance through my doctor's office(we make too much money for state medical).
    What can I do in the interim to alleviate some of the pain, or at least make it to where I have more good days? I have an active, autistic 8 year old that requires a lot of time and care, and I feel like she is missing out on quality time with me because I so often don't feel like doing much. Also, does this sound like Lupus? Or am I barking up the wrong tree? I know it is possible that it's just Fibromyalgia, but my gut is saying to look deeper.
    Last edited by christinaja; 11-12-2011 at 07:37 PM.

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    Hi Christina,

    Welcome to WHL.
    You have been through alot already.
    Alot of what you say, sounds like Lupus. But of course, nobody here can tell you that for sure.
    You will have to go to a Rheumatologist and he has to run some blood tests, that is the only way, you will know for sure.
    As far as I know, Fibro will not cause joint pain.
    I hope that you can get help, with your insurance.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    hi christina,
    i like a few others here have both fibro and lupus.

    there is about 63 different auto immune disorders.
    we have a thread listing them.

    it is not really important what your problem is called .......
    it is more important to get the correct medication.

    your local doctor can usually order the blood tests.
    but you will need to see a rhuematologist.

    once again welcome.

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    christinaja (11-15-2011)

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    Hi Christinaja:
    There are quite a few of us here at WHL who suffer from Lupus + Fibromyalgia + several other conditions that are also auto-immune disorders.
    The problem with auto-immune diseases is that: Often when a patient develops one auto-immune disease, that patient will also develop other auto-immune disease that all exist at the same time (overlapping).
    I say that to say that it sounds as if you may be suffering from the symptoms of Lupus and Fibromyalgia and possibly another auto-immune disorder. So, no you are not barking up the wrong tree. The answers to your issues may not be found in only one disorder - it may be found in several that are overlapping.
    Like you, I am also a thyroid cancer survivor (I did have to do the radioactive iodide ablation, the chemo and the radiation). I also have Lupus, Fibromyalgia, Sjgoren's, Raynaud's, Asthma, IBS,TMJ, and a few others!. It is difficult for me to determine exactly which condition is causing what symptom. It can be maddening sometimes.
    As has been mentioned, the best way to find out exactly what is going on is to have the tests done. Please be aware, however, that it can happen often that your ANA will be negative, but you can still have the disease. So make sure that your doctors run all of the tests and use all of them together, as well as your symptoms and your history, in order to make a diagnosis. Diagnosing Lupus (or any auto-immune disorder) cannot be dismissed or confirmed based upon the results of one test only!
    We are here to help you as much as we can. Please know that you are not alone

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    welcome to whl feel comfortable to ask any questions and vent about anything

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    christinaja (11-15-2011)

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    Thank you everyone for the warm welcome. I am hoping to get in to the doctor to have tests done soon. I'll be trying to learn all I can in the meantime, and trying toimplement some changes that I have heard can be beneficial for dealing with chronic pain and inflammation. I'll probably ask a lot of questions, so bear with me!

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    christinaja, are you sure you make too much money for state aid? How about the county or city you live in? Can you get some help from them? Do you have any "advocacy" type stuff available, through the state or county or whomever, that could direct you to clinics or doctors' offices that accept lower income folks on a "pay-as-you-can" basis? Maybe there's a church nearby that can help. I'm fortunate in having the insurance coverage that I do, and don't have to add that stress to my list of stress-inducers, so we'll do a little extra praying for you in that regard. Also, I feel for you with your child. My wife and I have two boys, and the youngest at 9 now is high-functioning, aspergers. That in and of itself can be a strain. However, be sure and look into state and county help for your child also. You might find it easier finding help for the child than for yourself. You might even (dependant upon your child's condition) be able to have a person come help you in the house a day or two a week, so that you'd be able to take better care of yourself. Good luck looking into it all.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    Hi jmail,
    Yes, I am certain. We applied back in September for state aid for my husband and I, but we have already been declined. As for county and city aid, it doesn't exist here. Our county only has three incorporated towns, and very few medical facilities. The charity medical that I am applying for through my doctor's office is the only help available to folks here. If I lived about 25 miles north of here, in the wealthiest county in the state, there would be far more help available. I'm still looking though!
    Thankfully, my ex-husband carries health insurance for my daughter, and we applied for SSI for her as soon as she was diagnosed four years ago. It took almost six months, but they didn't fight it. It was a tedious process, but it has helped her get so much help that would have been out of reach otherwise. She is pretty high functioning as well. She's very verbal, and is in regular class in school, as opposed to a self-contained special ed classroom. We have a wonderful school district, and she really has thrived.
    I just wish I had more energy and wasn't in pain so much of the time.

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    You've got a tough row to hoe there... Keep plugging away, and be sure and re-apply for state aid after the first of the year, or whenever their new fiscal year starts. We'll be praying for you all.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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