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Thread: Hello all!

  1. #1
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    Default Hello all!

    Hello all! My name is Beverly and I am almost 30 years old. I have a little girl that is 17 months old. Boy is she a handful. I was diagnosed with both lupus and Sjogren's syndrome in May of this year. I am having trouble dealing with it all. I hate my rheumatologist. He is very insensitive and unprofessional. When I received my diagnosis he never even told me what lupus or sjogren's was and what to expect. He just writes me prescriptions and tells me he'll see me in 3 months. I am currently taking Plaquenil, Salagen and Restasis. I guess I'm doing ok on it. My eyes and mouth are still constantly dry. Today I woke up with every single joint in my body hurting. What can I do to help ease the pain a little. I feel like I'm a 90 year old woman. Well everyone that is all for now. I can't wait to get to know you all.

    Beverly

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    Hi Beverly

    Welcome to the site.

    Having troubles with rheumy's is a common problem. There are some good ones out there, but most of us find we have to "manage" our rheumy's as well as our health issues.

    When you have an appointment coming up, sit down a couple of days before hand and write down in point form what you need to discuss with them: Symptoms you've been having (no matter how small) As well as lingering questions that didn't get answered or new question.

    Do NOT let me make you feel rushed. It's your dime and your time.

    I know only see my rheumy once ever six months, so when I do go in I make sure I have presented all my issues.

    As for your joint pain, there are some things you can do to ease that while you waite for the plaquenil to kick in. It can take months before you feel the effects of the plaquenil.

    Which joints are hurting? For me it's my feet, knees and ribs. Feel around the joint for "hot" spots. An area that is warmer to the touch. If you find them put a cold compress on it for no longer than 10 minutes at a time.

    I wear a soft "sports" knee brace when I'm doing anything physical, like house work or laundry or going for a walk, driving.

    It helps to support the joint.

    Do you have any swelling in the feet and legs? This usually happens when you have joint pain. Your body is flooding the area to protect the joint.

    I wear compression socks as soon as I get up in the morning for about an hour or two. (Diabetic compression socks work best for me)

    With the plaquenil, you will eventually notice that the pain is not as bad. You can actually do things that you haven't been able to do for a long time. You should also notice that the swelling eases quiet a bit.

    If the plaquenil is upsetting your stomach or if you are having dizzy spells or headachs from it, call your doctor and as if you can take both pills at night with a single serving of yogart just before bed.

    My family doctor recommened that I take mine this way when I complain of side effects, and I have to tell you it worked wonders.

    You are an active mom so I'm sure that keeps you pretty busy. It is important to keep your joints moving. A light low impact excersize routine is a good thing to do.

    If I sit too long my joints seize up, if I move to much...yep my joints seize up. You have to find the balance that rights for you.

    It's very cold here and damp. I have polar fleece sheets on my bed which helps me sleep at night and keeps my joints warm and happy.

    I use a memory foam mattress, I find it gives me the right amount of support, plus it's very warm and snuggley

    I'm sure the others will be along soon to welcome you. Feel free to ask any quetions you like, this is a warm and friendly site.

    By the way I am not diagnosed and not sure if I ever will be at this point.

    My mother had lupus and my sister is diagnosed. I how ever have an idiot for a rheumy who is not interested in continueing testing for me even though I have many of the classic symptoms and have tested possitive on ANA test.
    Oh look ... a cookie

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    Hi Beverly,
    Welcome to the site. My name is Kathy and I have SLE, Lupus and Sjogrens and several other Auto-immune disorders. What I am wondering is why your doctor did not put you on any of the NSAID's for the pain and inflamation of your joints. When you see your doctor again tell him right out that you want to be put on NSAID's. I am taking Sulindac (Indocin) which is a perscription NSAID (Nonsteroidal Anti-inflammatory Drug). Salagen is a good drug for the Sjogrens dry mouth and Restasis is good for the dry eyes, but it sounds like you need an NSAID medication. You can take some over the counter ones like Aleve or motrin. I would definitely address this with this doctor and also I would list all of my symptoms right down on a paper and any questions that I would need answered and discuss it with him.

    There is no cure for these illnesses and they are chronic. It can be treated though. You need to be careful about the sun and flourescent lighting as these can trigger a flare. The worst thing though of all is stress. Stress will set off a flare very quickly. I hope that you keep posting.

    There are a lot of good folks that come in here. You met SITC and she gave you some good advice. I hope to get to know you.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Default loneliness



    hiddy ho, my name is Ms.Paula,I turned 62 this month.I am new here & old to lupus.
    My mother died with it in 1984, I've had it since 1990. I know oh so well how miserable a person can get with this stuff. Like many of you I also have severe problems. you can name just about anything that is connected with lupus and I've probably have it.
    For the life of me I don't know why the good Lord is keeping me here.
    so happiness to all !!!!
    Ms.Paula

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    Hi Ms Paula,
    Welcome to the site. My name is Kathy. I will be 50 in December, but have had Lupus they believe since I was the age of about 5 years old. I am no newbie to this horrendous nightmare called Lupus. This stupid disease has done a lot of nasty things to me too over the years. I guess the good Lord is keeping you here to help others to deal with this rotten disease. Well I just wanted to welcome you to the site and I hope to get to know you. Please keep on posting.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  6. #6
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    Default swirling

    :scrambleup:
    kathy,do you ever get dizzy doing all that dancing?
    I watched it for afew seconds, golly it makes ya' :shock: lol
    like to get to know you too.
    thanks for your time.
    Ms.Paula

  7. #7
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    Hello Ms.Paula and welcome

    I'm 48 yrs old and not diagnosed yet. My mother passed away in 1987 from lupus.

    My sister has been diagnosed with it shortly after my mother's death. She has thankfully been in remission for quite a few years although she has other health issues that she manages.

    I've had symptoms myself since I was 19, but no one ever put 2 and 2 together.

    Going on three years now, I've had alot of immune system issues and joint issues.

    Glad you found us, and I'm sure you will have alot to add to this site.

    I'm sure you'll find the folks to be friendly, it's a great place to share with others.
    Oh look ... a cookie

  8. #8
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    sits-in-the-corner.
    thanks for the acknowledgment. It's really nice to have someone to talk to.
    all my family are gone,except for my two sons & theirs. they took all my money & desserted. I'm not even allowed to see my 5 grandchildren.
    all my friends have either moved or died. I have two dogs,but they don't have much to say. :lol
    I don't go anywhere,because the gas is too high. the only time I get out is if I have an appointment.
    that's when I do errands,too. I talk everyones ears off at all the stops. they sure get tired of me. all these people on this site I'm sure,wants to talk about one thing or another and has probably felt like no one was listening. I can't understand why people shy away from sick people !
    But the good Lord has got me to this point in time,even if his ears are aching. But I really am thankful for anyone taking time out just to say hello.
    happiness to all
    Ms.Paula

  9. #9
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    Awww ms paula,

    Life can be very lonely sometimes. Especially when we are missing our loved ones who have gone on ahead with out us.

    There's not a day that I do not feel their presence in my life. I've lost quite a few family members. I like to think of them watching over me, perhaps guiding me.

    I have a cat, a dog and a husband :lol: all three of them males :P

    Feed clean and pick up after them lol.

    What type of dogs do you have?
    Oh look ... a cookie

  10. #10
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    sits-inthe-corner.
    your lucky that you still have family around. this crappy lupus has become the only company I have, and I keep asking it to leave,but it's like any bad guest ---- it won't go. lol
    my dogs are so loving, the male is a black lab and the female is a great pieranese.I had a doggie door installed last spring, oh boy what a difference it made.now they come & go as they please. the only bad part of it [not counting the grass they bring in] is when they bring the field mice in,they act like it's a gift.lol but I do praise them.
    I was in the grocery business for 33 years,after the lupus ,I did little jobs.
    I wrote afew stories & sold them.I've designed some product logo's.shoot,I've even stuffed some envelopes.last winter I had a bull out here in the pasture for a man,he needed to get him away from the girlies!! I fed him,watered him.but they didn't bring him now,because I made him a "big" baby. he's not as aggressive as he should be !!!
    I thought it was better if he didn't try to kill everyone !!lol
    so thanks for the time,
    happiness to all,
    Ms.paula

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