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  1. #1
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    Default New Member

    Hi Everyone,
    My name is Faleisha. I am married and have 3 beautiful little girls ages 6, 4 & 2. We live in Northwest Indiana not to far from Lake Michigan.
    I was diagnosed with SLE Lupus & Mixed connective tissue disease about 3 months ago.
    *****Now, I guess I should tell you all a little of my story********
    Well.....Get comfortable
    I lost my dad June 1, 2004 to cancer. My dad and I were very close and I was devestated and still am.
    About Novemeber of 2004 I started not feeling well I just felt like i had the flu 24/7. By the time December 04 came I thought I was going crazy, I just couldn't get off the couch, I was so tired and I knew I had so much work to do around my house but I just couldn't do it. So then I started telling myself I was just a lazy person and I would ask myself why are you doing this get up.
    January 1, 2005 at 2:00am my husband rushed me to the E.R. we thought I was having a heart attack, I couldnt breath, i felt like someone was chocking me, my heart was racing and I was vomiting so the doctors did all kinds of heart tests and said "you are having a severe panic attack". Now boy these panic attacks can really fool you! I still have the attacks but I have been put on meds. for them since my diagnosis and am doing better.
    Next in Febuary I started having vision problems which I thought was nothing.
    Then in the end of Feb. I woke up with the most terrible pain i have ever had. The pain was from my knees down to my ankles and in my left hip. The pain went all the way into my toes and felt like someone was beating my toes with a hammer and I would cry and cry. Now I had all this pain for about 3 weeks and one day it just stopped and then my muscles started to twitch all over my body so of course I go to the internet looking up Muscle twitching and come up with the terrible A.L.S. and I was so terrified so I called a doctor and made an appointment. He sent me to a rheumatologist and he said I think you may have Lupus, he said "twitching with lupus is rather rare but Lupus effects everyone differently" so he did the blood tests and believe me he did alot of test and called and said Yes you have SLE Lupus & MCTD and he also said that My blood is very thick due to the lupus.
    So now I'm on Mobic for my joint pain, asprin twice daily to thin the blood , effexor for depression, klonopin to stop my severe panic attacks, and b-12. I go to my doc tomorrow to talk about a anti-malarial drug I will be starting.
    I have been in terrible pain for about 6 months and now all of the sudden the pain is almost gone but I am still extremely fatigued. My doc says I was in a bad flare and that he's not sure how long I will be feeling good.
    I am having alot of vomiting and I'm overweight but I have been losing 5-8 pounds a week because I have no appetite.....is anyone else having this problem? Also do any of you suffer from muscle twitches? The klonopin seems to have helped alot with them but I still have a few.
    Thank you for reading my long long letter but I am very happy I found this group and if anyone would like to talk at anytime please email me i would love to have someone to talk to about this someone who knows what it's like.
    Thankyou,
    Faleisha[/b]
    Never let a day go without telling your kids you love them.......Tomorrow is not promised to any of us.
    Live Strong, Pray Hard, and Love Truely

  2. #2
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    Welcome Faleisha!

    I'm sorry to hear you have had such a difficult time of it. It sounds like you are blessed with a strong family, which should help you through the difficult times.

    As your doc said, lupus does affect each of us a bit differently. Each of us learns our own way through the complexities, and groups such as this one help us learn from each other and support each other as well.

    The anti-malarial is probably plaquenil, (Hydroxychloroquine), I'm on that as many of us are. To me it has been a wonderdrug, reducing my pain and fatigue. I've fully stopped the pain med, relafen, that i'd been on, and only take aspirin or tylenol arthritis (also a wonder drug if you ask me!) for intermittent pain and headaches. Some cannot tolerate the plaquenil, for them, there are a few other meds coming out, which is great. Seems weird, doesn't it, that something originally given to fight malaria helps lupus! But it does.

    Many hugs to you, dear, and I hope we hear more from you as time goes by!

  3. #3
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    Default Where are you?

    First of all I am very sorry about your Dad. I too have recently lost someone bery important to me it is truely heartbreaking.

    I understand about the panic attack. I was there last year, it was a very scary thing for all of us (husband and 3 kids). But hey, at least the drugs for that are good!! :lol: Sorry, humor is the only way for me right now.

    I feel that one of the most important issues to consider is your doctor. I you aren't sure of what he is saying or if there is not enough information exchanged, find someone that you are comfortable with.

    Where exactly do you live? I am in Granger, I'm sure not very far from you. I have been here for 15 years, if you are close I may be able to help with doctors.

    If I can help, let me know.

    Karen

  4. #4
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    Hi and welcome Faleisha
    :lol:
    I know what you mean by the panic attacks! I still suffer from them now and then but, like you, my first one sent me to the emergency room thinking that I was having a heart problem!!
    We Lupies seem to go the distance with these numerous symptoms and Accompanying conditions don't we?
    The antimalrial, like Hatlday said, is most likely plaquenil. Plaquenil can decrease damage to the tissues of the joints, skin and other organs in the body. Plaquenil has beneficial effects on 3 major aspects of lupus; skin rashes, aches & pains and fatigue. It is very effective in the treatment of a whole variety of lupus skin rashes, particularly those found to be worsened by sunlight. Thus it is widely used as first choice (or ‘first line’) treatment in lupus. As well as helping the skin itself, it is often helpful in treating hair loss in lupus. It helps the muscle & joint pains, though in cases where these are severe, its effects may be too mild. One of the most successful uses is in fatigue, many patients show improvement after several weeks’ treatment of plaquenil.
    Your loss of appetite is not at all uncommon. Half of all patients with lupus have a loss of appetite (anorexia), with resulting weight loss. This is usually noted in the early stages of lupus. Anorexia & weight loss are generally seen when the disease is active. Weight loss and poor appetite can not only be caused by the illness itself, it can also be caused by some medications. Do you suffer from stomach upset or mouth sores (also called mouth ulcers)? This is usually due to some medications also.
    Your doctor should assess your weight loss and other related problems and suggest changes in your diet to be sure that you are eating right and have no weight loss that could be a health risk.
    I am glad that you were able to get a diagnosis for your leg twitching and pain. These are also not uncommon for us Lupus sufferers!!
    I wish you the best of luck, we are here to support you, comfort you and provide you with as much information as we can!!
    Peace and Blessings
    Saysusie

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