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Thread: Are these lupus symptoms?

  1. #11
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    Hi Debbie! I am just checking in to see how you are feeling this week
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

  2. #12
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    Quote Originally Posted by Danica01 View Post
    Hi Debbie! I am just checking in to see how you are feeling this week
    Thanks for asking, I feel the same, in one word SUCKY. I think it is a huge flare.

    Debbie

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    AWWWW, so sorry for your huge flare Debbie Hope it passes soon for you. GENTLE HUGS XXXXXXXXXX
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

  4. #14
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    Hi friends,

    I have to bring this up again.
    I am still dealing with the same things, as I did over a year ago, when I first posted this.
    I told my rheumy about it, but he dismisses it. It is something, that started about a year and a half ago, out of the blue. There must be a reason for it, or am I just an idiot?
    All these symptoms are very disturbing to me and very bothersome.
    Yesterday I went to our local grocery store, a very nice upscale store.
    When you walk in, the kart corral has a tile floor, hearing the people push their karts over these tiles, the noise hurt, not just my ears, but my whole body.
    Right next to the entrance is the bottle and can return, it was so loud, that I thought, I would loose my mind.
    Then after entering the store they had a message over the intercom, something about a car in the parking lot, it was repeated three times, OMG the noise.
    After that I had to walk past the fish department, the smell almost killed me.
    Driving home from the store, the seatbelt really hurt my skin, or better the tissue under the skin, I couldn't wait to take off the seatbelt.
    When I was finally home, I could barely carry in the few groceries I bought, I dropped them on the floor, when I walked into the house, that is where they stayed until my husband came home, thirty minutes later.
    What a life.

    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).

  5. #15
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    Debbie, I think that I may be experiencing something similar to what you are describing. I don't feel it all the time, but I know I have a few times. Sometimes noises or certain "normal" motions (ones that wouldn't hurt anyone) send this response through my body like a pain/vibration. Smells are disturbing most of the time b/c I'm very sensitive to them. My skin has hurt like that a few times. Just someone brushing up against me was torture. Even having my bra strap graze my shoulder hurt like the skin was tender. I know what you mean. It's like.. gimmie a break here! haha

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    Hopefully you are starting to feel a bit better Debbie. I suppose one of the reasons why Lupus is called Lupus is because it sends people Lupie, or other people might think you are a bit Lupie, especially certain doctors because they don't have any answers. I was getting all stressed out about heaps of different things going wrong, wondering if it was Lupus or not. Then someone told me to accept that life is going to be difficult and focus on what I can do to get through the difficulties instead of focussing on how it is limiting me and my life.

    Point 1 - loud noises - Therefore I was thinking about your situation about loud noises at the shops. Have you got an mp3 player or iopd music thingy? You could listen to that to distract you from the other distracting noises. My 22 yr old daughter has autism and she cannot stand hearing babies or toddlers making their usual noises on the bus, so she listens to music that does 2 things. Calms her down and distracts her

    Point 2 - the smells of fish - urgh - I also think it is disgusting and try to avoid the smelling fish section as well, however it does not make me feel sick. How about eating some hard lollies. If I eat certain cough lollies, especially eucalyptus ones, that is all I can smell, or taste. This might help you drown out the fishy smell.


    Point 3 - seatbelts. Here in Australia we have sheepskin pouches or padded fabric to put on the top of the seat belts so it doesn't rub into the small kids necks. Perhaps you might also have that in America. YOu might have someone who could make one for you. This picture might help you to see what I mean.
    http://www.bigw.com.au/sports-leisur...t-belt-comfort

    Point 4 - Carrying bags into the house. DO you have an esky? That is a cooler where you put cold food in when you go on a picnic. Pack your shopping in them so they can last a bit longer in the car until someone comes home to unpack the shopping for you.

    These tips might help, or someone else might have some better ideas. Don't wait until you are feeling unwell before you set up some alternatives, be prepared in advanced so all you have to do is to just slip into the 'Flare first aid'. Let us know what you do to make life a bit easier.
    Diagnosed with Lupus - 22 June, 2010

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  9. #17
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    Debbie,
    These sound like neurological problems to me. Your doc needs to address them rather than dismissing you.
    Hugs,
    Marla

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  11. #18
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    Quote Originally Posted by Islablue View Post
    Debbie, I think that I may be experiencing something similar to what you are describing. I don't feel it all the time, but I know I have a few times. Sometimes noises or certain "normal" motions (ones that wouldn't hurt anyone) send this response through my body like a pain/vibration. Smells are disturbing most of the time b/c I'm very sensitive to them. My skin has hurt like that a few times. Just someone brushing up against me was torture. Even having my bra strap graze my shoulder hurt like the skin was tender. I know what you mean. It's like.. gimmie a break here! haha
    Thank you for responding.
    Like you, I don't have it all the time, but most of the time.
    Some days it hurts to wear my pants. And boy, if there is a tag in my shirt, I better find some scissors, so that I can cut it out. Because it will go from feeling uncomfortable to pain in no time at all.
    I am sick of it all.

    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).

  12. #19
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    Quote Originally Posted by Linda From Australia View Post
    Hopefully you are starting to feel a bit better Debbie. I suppose one of the reasons why Lupus is called Lupus is because it sends people Lupie, or other people might think you are a bit Lupie, especially certain doctors because they don't have any answers. I was getting all stressed out about heaps of different things going wrong, wondering if it was Lupus or not. Then someone told me to accept that life is going to be difficult and focus on what I can do to get through the difficulties instead of focussing on how it is limiting me and my life.

    Point 1 - loud noises - Therefore I was thinking about your situation about loud noises at the shops. Have you got an mp3 player or iopd music thingy? You could listen to that to distract you from the other distracting noises. My 22 yr old daughter has autism and she cannot stand hearing babies or toddlers making their usual noises on the bus, so she listens to music that does 2 things. Calms her down and distracts her

    Point 2 - the smells of fish - urgh - I also think it is disgusting and try to avoid the smelling fish section as well, however it does not make me feel sick. How about eating some hard lollies. If I eat certain cough lollies, especially eucalyptus ones, that is all I can smell, or taste. This might help you drown out the fishy smell.


    Point 3 - seatbelts. Here in Australia we have sheepskin pouches or padded fabric to put on the top of the seat belts so it doesn't rub into the small kids necks. Perhaps you might also have that in America. YOu might have someone who could make one for you. This picture might help you to see what I mean.
    http://www.bigw.com.au/sports-leisur...t-belt-comfort

    Point 4 - Carrying bags into the house. DO you have an esky? That is a cooler where you put cold food in when you go on a picnic. Pack your shopping in them so they can last a bit longer in the car until someone comes home to unpack the shopping for you.

    These tips might help, or someone else might have some better ideas. Don't wait until you are feeling unwell before you set up some alternatives, be prepared in advanced so all you have to do is to just slip into the 'Flare first aid'. Let us know what you do to make life a bit easier.
    Thank you for your tips.
    I don't have a music thingy,lol. When I have a real bad day, I can't even listen to music, it makes me feel worse.
    That is funny, I did try the eucalyptus, it smelled like there was a fish in eucalyptus field.
    The seat belt sheepskin is a good idea too, but like I said, some days even my clothes hurts, or the hair brushing over my face.
    My husband got mad at me for going shopping by myself that day, I am really stupid, all I have to do, is call him and ask him to pick something up from the store on his way home from work.
    Thank you again for all your great tips, but as you can see, I am a freak, normal things don't work for me.lol

    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).

  13. #20
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    Quote Originally Posted by magistramarla View Post
    Debbie,
    These sound like neurological problems to me. Your doc needs to address them rather than dismissing you.
    Hugs,
    Marla
    Do you mean I am crazy? JUST KIDDING.
    Many times I have thought about it being a nerve thing. Since my rheumy is, to put it nicely, a moran, I will talk to my primary.

    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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