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Thread: Really need advise

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    Question Really need advise

    I was diagnosed with lupus and siogrens ten months ago while pregnant with my third daughter. I lot of they way I was feeling I chalk up to being pregnant. Jillian was born health 3 weeks early to preclampsia. She is health and has thrived. Around Christmas I did feel felt the way I did when my liver ememzine went up right before I had my daughter. I call my reuhmatologist because she told me she would mange my lupus, she tells me to call my family dr. So yesterday not feeling well I call my family dr she tells me to call the reuhmatologist. Today I feel a little better but when I first woke up I felt like a truck ran over me. My back hurts, I'm having mucle spasms in my left arm and right thigh, my right foot hurts certain ways I step ( i stepped funny off the kitchen step stool cleaning the top of the frig) my right hand is stiff, sore and is tingley then theres the brain fog is driving me crazy. This week it been bad my husband hate to talk on the phone with me cause I zone out on him then the other morning it took three tries to make my 7 year old oatmeal I turn on the wrong burner caught a bag of sugar on firer the boiled the pan dry twice I finally stood right at the stove and got her oatmeal made. I don't want to bother the doctor and I am feeling a little better are these things I should go see her a bout or just wait them out? Really not sure what to do.

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    Hi Flower,
    Welcome to the WHL and i'm sorry to hear what you've been going through.
    I have Lupus and sjogrens disease also, the foggyness and slowness is coming from both dieases especially if they're fighting at one another in your system as my blood specialist told me that's what can happen and refering you muscle spasms i have that every morning in my left calf and toes plus can go to the top of my legs if it's really strong and in your arms and feet that's the sjogren's working strongly with your muscles, as it is a muscle wasting diease.
    I'm really sorry to say it's a combination of both but it sounds like you've got the sjogren's working strongly, are you on any meds for what you've been diagnosed.

    Hugs Terri xxx

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    I'm on baby aspirin but that is for a clotting issue. Vitiam D 1000 Iu, folic acid, calcium, omeprazole, and a multi vitamin these are all med I was one for the pregnancy that they have left me on. I try not to even take meds for the aches and pain because Ibuprofen with long term use tears up your stomach which my acid reflux already is bad. I also have noticed that my aches are so constant that I really tend to ignore how I feel till I take something and the constant ache is gone I then tend to notice how I was aching. If that makes any scence. I really hate that when I pick up my youngest Jillian that that my back hurts she is 4 months old and weight 11 lbs. She is such a peanut my back should hurt to pick her up a couple years ago was able to help my father bail hay and work at lowes and load 50lbs bags of mulch with little struggle. I don't think I will ever get use to the brain fog I'm always scared my 5 and 7 year olds teachers think I'm a flake, because I forget library day and home work sometime. My husband got me an iPad for Christmas it seems to be helping me keep every thing in one place. Thanks for the support my husband and family are great but I try not to complain to them because there is not much that they can do. I'm not sure what I should be doing to help Keep myself health. My husband keeps asking what I should be doing to treat them and I'm not sure and I don't want to running to the doctors till we get out health insurance back. Though he keeps telling me insurance or no insurance that if I don't feel well to go see the doctor.

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    Hi Flower,
    Yes - those symptoms do sound familiar to those of us with Lupus/Sjogren's overlap. You should definitely get your rheumy to pay attention and start treating your diseases.
    I take Plaquenil daily and a methotrexate injection weekly, and that combination of meds has helped me with the brain fog and I have much more energy.
    Talk to your rheumy and demand some treatment. You need to be on top of things for your little ones.
    Hugs,
    Marla

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    Hi Flower,
    Your Doctor should have sorted you out a good while ago, you still should'nt be taking things you was having when you was pregnant, i'm on asprin 75mg but that's only to help keep me clear of clots because i had DVT in the past.
    When you was on about different pains and taking notice, i do know what your on about your recognising symptoms from day to day and when it comes on you, you actually know what pain it is again.
    Well my rheumo put me on paracetamol and now i'm on plaquenil like marla 200mg daily and although you don't like taking meds there will come a time where you will be grafteful of something to help you, i mean i take the pharmacy for other reason's and condition's but if this plaquenil helps me i won't half be happy as the pain makes me depressed and fully break down of crying.
    It's not nice to say but you'll most likely never have the strength you had, i don't and a good many other member's don't and just cleaning my home, as all had to be really spaced out and the foggyness is terrible.
    Your husbands correct in what he's saying in you needing medical help with a doctor and try not to hold stuff back from your hubby also, when i spoke to mine i felt like a parrot at times then i thought i was doing his head in but when he came to several visit's with me and heard what they had to say, i could'nt wish for such a golden husband he goes as far as possible daily to do things to help me with the diseases.

    Me or marla can't tell you what to do but like we suggested you do need to either see a doctor or Rheumo to help and the way your body feels.

    Hugs Terri xxx
    Last edited by Peridot20_Gem; 03-11-2011 at 01:53 PM.

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    Oh Hun I am so sorry for you! Your comment of "not wanting to bother the doctor" is completely wrong! I came from a place of being like that too but many here made me understand that the doctor works for ME I don't work for him. Do whatever you have to so he will listen! If you can't get him to listen to you get another doctor! You know you body better than anyone and don't ever forget that! You are important and he needs to treat you as such

    PS Glad you are here with us! Welcome to the family!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    hi flower.
    listen to the three ladies who have written to you. they have many years of wisdom, and suffering.

    see your doctor, it is not bothering him, to see him when you need him.

    you have a right to reveive help. if this doctor wont help go next door and see the next doctor.

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    Hi Flower,

    Definitely see your Doctor. It's no bother-it's their job to be there when you are in need of medical help. I know how you feel when it comes to brainfog. I've been rather foggy myself the past few days. I lose track of my conversation a lot, it's frustrating.

    It sucks to deal with, but you are definitely not alone.

    Rob

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    Thank you everyone I will make an appointment on Monday. Up to this point i though I had delt with the lupus diognoisis pretty well. I now believe there was a little denial in me. Which it hit me yesterday as a crawled out of bed feeling like a bus hit me that most people don't feel this way every morning. I know there was a time when I didn't I just can't remember when. This really made me angry I got over it then headed to the store we needed milk well I need to go get milk when I'm done here because I never did make it home with milk yesterday. I wasn't going back after the second trip the first I forgot my wallet and the second I paid for the milk it was the last bag of the order and forget it at the register. When I got home I just wanted to cry my poor husband gave me a big hug and told me he would just eat eggs. Yesterday really didn't improve I had muscle spasms all day and I went to work but only last three and a half hours thank god I work for my dad I do his billing for his business. I hope to be able to finish what I was working on today. Not sure I feel the same today as yesterday add the feeling of lead to my arms and legs. I will at least give it the effort I can. like I said thanks everyone for the advise and support.

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

    It's really uncanny, you sound so much like me! Leaving my wallet at home, leaving the milk at the store, feeling like there's lead in my arms and legs. I call that feeling "Lead Blanket Fatigue", and it sounds like what's happening with you.

    Denial and anger are normal things. For me, I'm long past the point of dealing with denial, but I still get angry at times.

    Rob

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