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Thread: Hello, I'm new here, but not so new to SLE

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    Question Hello, I'm new here, but not so new to SLE

    Hello Everyone,

    I was diagnosed with SLE three years ago, at age thirty one , although in retrospect my symptoms started much earlier. At about age thirteen I started having issues with photosensitivity, they questioned Lupus at that time, but apparently, there was not enough criteria to make a diagnosis. In my late twenties I started experiencing extreme fatigue, that I chalked up to being a mother of two young children. I was a full time EMT for eight years, until my fatigue became so unbearable, that I would come home from work and fall asleep on the couch, still in uniform. My hair started falling out, and then I started to experience joint pain. Working in a very physical job, I contributed the joint pain to all the heavy lifting. I started pulling muscles every day at work; every time I would attempt to lift the stretcher, I would pull something. Inevitably I had to resign from a job that I loved. It was at this time that I was diagnosed, and stated taking anti-malarial drugs (plaquenil) which has helped significantly. Luckily I was able to find a new job; one that is non physical , and love doing equally. I have been very fortunate in this regard.

    I have a lot of muscle pain, and started becoming rigorous (stiff) and clenching my muscles when I sleep, I was put on muscle relaxers, that did not help - my Rheumatologist tells me that this is not related to my Lupus, and that I have Fibromyalgia, as well! From what Iíve read online, it seems that many Lupus patients suffer from muscle pain, has anyone else experienced this, or been given a second diagnosis?

    My Brother, who is four years older then me, was also diagnosed with Lupus, five years prior to me, but yet my Rheumatologist tells me that there is no evidence to suggest heredity, has anyone else been told this?
    I am concerned about my youngest daughter, who is eleven, and started experiencing photosensitivity, at about age nine. I would love to hear some feed back on this subject in particular.

    Well, I do apologize for rambling on, but I have much to say, and still so much too learn!

    Sincerely,
    Kristen


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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Kristen,

    I'm Rob, and I was diagnosed with SLE five years ago. I'm 41 years old. I have been told that there is a very strong possibility that Lupus is hereditary, although it has not been proven. My mother has Lupus, and I'd say probably 2/3 of our members here who have a definitive diagnosis of one of the forms of Lupus have a sibling, parent, or child with the disease as well.

    There is absolutely nothing that I'm aware of that proves Lupus is NOT hereditary, so your rheumo's opinion is just that-an opinion. Of course, my thoughts are only my opinion, but they are based upon the real world fact that the majority of those I know with the disease have other family members with it as well.

    As far as muscle aches and F.M. goes, I have neither. But, there are quite a few people here who do have F.M. and the muscle pain. Some of them should be along shortly with their thoughts on the subject. Anyway, welcome to our group. Please make yourself at home.

    Rob

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    Hey Kristin,

    Welcome to the forum...
    What is wrong with that Rheumy???? Not hereditary? Sometimes I think that some of these doctors got their license out of a cracker jack box.
    The truth is they don't know a whole lot about autoimmune and what causes it, but I have not seen that it is not hereditary...but there is a possibility of it being inherited. My family is a case in point...like you I have a daughter who appears to have some of the symptoms(malor rash, sun sensitivity,etc..)...actually it is two daughters and a son with Reynaulds and other things....another daughter is being tested for Crohns Disease or Ulcerative colitis...

    So I also believe that your Rheumatologist is just giving you his opinion. As for your daughter, time will tell. I have adopted a wait and see approach...if they aren't complaining of anything then I am not taking them in. My malor rash child was with me last year when I went to an appt with my Rheumy. When he walked in he did a double take as that is how obvious it is...
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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    hi kristen,

    as you can see, there is a lot of evidence in this group that lupus is commonly among family memeber, it may not be genetic, but it is there. so watch your daughter very carefully.

    as far as fibromyalgia, i have FMS along with lupus. I was diagnosed with fms 13 years before the lupus diagnosis was added. fms involves a tremendous amount of pain in the small tissues. there are some specific pressure points that a knowledgeable rheumy can touch and the dr. will be able to determine the diagnosis. these pressure points will for no reason start burning like a cigarrette held to the spot. it takes little time for the pain to spread through the small tissues, and suddenly you are hurting all over. since the tissues around our joints are typically the smallest, this seems to be where the pain is stronger. the area around my wrists and knuckles are my most painful areas. the ankles, knees, elbows, and shoulders are often involved.

    so yes, there is a double diagnosis, but it can take time....

    as far as treatment for fms....pain meds are my treatment of choice. many people take Lyrica and are having success with it. there are some of us that tried but could not take it for various reasons. other than that, going to bed and resting when in a flare will help reduce the level and duration of the painful flare.

    hope all of this helped....welcome to the group....we are always here.
    Phyllis

    share a smile today

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    Hi Kristen;
    I am Saysusie, moderator/administrator of this site. I am one of the members who have Lupus and Fibromyalgia and I suffer from the muscle pain, stiffness and burning. I describe the burning as if someone were taking a torch and running it up and down my muscles, just beneath the skin. The pain and the stiffness are almost unbearable and muscle relaxers only help a little. I find that what helps me the most, with my Fibro, is exercise (I know that sounds like an oxymoron). Regular exercise really helps with the stiffness. My personal exercise regime includes swimming, pilates, and yoga. It is important that we exercise, but equally important that we DO NOT engage in hard aerobic type of exercises (Stay with non-jarring exercises like walking, yoga, pilates, bicycling, swimming, etc.).
    You will find that almost everyone who has been diagnosed with Lupus also have a diagnosis of one or more overlapping auto-immune disorders. It is very rare, in fact, to find someone with Lupus only
    With reference to Lupus being heriditary, as Rob mentioned, this discussion has been ongoing. While most researchers will tell you that the disease is not hereditary, they do admit that it is genetic. It is their theory that Lupus is not hereditary in that the disease, itself, is not passed from parent to child. It is genetic in that a predisposition to developing the disease (or another auto-immune disorder) is passed down from parent to child. It is important to recognize this distinction. Not everyone with a parent who has lupus will develop the disease itself (Lupus), and children can develop the disease even if neither of their parents have lupus. However, children with a parent who has lupus are more prone to develop an auto-immune disorder (not necessarily Lupus) than children whose parents do not have lupus.

    I am glad that you are here and I hope that we can help you in any way that you need!

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

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Saysusie,

    I kept thinking that "hereditary" wasn't exactly the term I wanted to use in my above post, but I couldn't for the life of me remember the proper term. Genetic Predisposition is that term. Thank you!

    Rob

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    hello Kristen, i understand what you our going though i have a daughter that i'm worry about she always tired her hair fall out i mean she get hives everytime she going from cold and hot she has to take bendral everytime i took her the doctor she said that she find . but i started like that before i came postive with SLE . just take one day at time . don't worry some much i keep saying that to my self everyday .

    take care
    maria

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    Wink Thank you

    Thank you all,

    For your input and advice. It is so nice to talk with people who are experiencing the same symptoms, when I mentioned the burning sensations to my Rheumatologist, he looked at me like I had ten heads. Im glad I found this forum, to ask questions, seek advice, or maybe just vent!

    Thank you all, and take care!

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    Hello Maria,

    Yes my daughter gets hives as well, usually in the spring and summer months, when she is in the sun. I have always been advised to give her Benadryl, but it only seems to help her sleep, and yes, I do just try to take it one day at a time, some just better then others!!

    Thank you,
    Kristen

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