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  1. #1
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    Default Hello All

    Well I have spent the last week or so reading all about all of you...it has made me feel as though I know many of you already - the information you leave for others has answered so many of my own questions

    Here is my story...
    I am 35 yr old mother of 2 beautiful girls (age 5 and 2) and wife to my hubby for 10yrs and was recently Dx with "some form" of Connective Tissue Disease. For me this was a very quick dx, but one that was probably 20 or more years in the making...
    One morning I stood atop the stairs and debated with myself about walking down them - I knew it would hurt that much. That was the day I figured something must be wrong with me, so called for Dr. Appt. Saw him a couple days later. Although he suspected "nothing" or perhaps FM, he ordered blood tests. A week later I was back to see him with Positive ANA, high Rheumatoid Factor, low platelets. He called a Rheumatologist himself and I had a specilist appt within a week. Rheumatologist probed me with questions....losing hair - yes, sore joints - which ones (ALL), go back in time....breathing problems, severe migraines, rashes, 2 previous lupus tests in my teens and twenties - "inconclusive results"...he was good enough to check all my joints - swolen - each and everyone one from my toes to my neck and jaw. He asks me what I take for the pain...nothing, I don't like to take anything. He prescribes me Naproxen.
    He orders many more tests and is to see me 3 weeks later (23 June) for my results. He suspects Lupus, but needs to confirm. In the meantime, I am experience brutal pain...odd that I go from discomforting pain when I don't know what is wrong to excrutiating pain now that I do. I suppose I was just working up to a big flare and now am in the midst of it.
    This site has been a great blessing during this time, my hubby doesn't get it (although he has Crohn's and an extremely bad back injury that puts him on pain meds to the extreme) because I have always been the "strong and healthy" one. My kids are too little to know. My mom and dad live accross the country and since Mom is a nurse has always had the idea that "unless you are dying all is well :? bless her, that is who she is!

    So thank you all for being here to answer questions and remind us that we are not alone

    I wish you all a good weekend
    Batch007 (yes like bond I am 007 :lol: )

  2. #2
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    Welcom Batch -
    Well, it certainly sounds like a lupus Dx is coming. I very often cant do the stairs due to pain (everywhere, but my hips are the worst lately). Because I have to tinkle about 10 times a night, I often sleep on the couch so I dont have to go up and down the stairs. (Only one bathroom here unfortunaltey). Maybe your husband could look through a book or website or something so he could begin to understand what you are going through. I think this is a common situation for many here - spouse not understanding). I am fortunate that my hubby is very supportive, even when doctors couldnt figure out what was wrong with me. He is the one who actually pushed me into getting back to seeing doctors again after I literally gave up trying to find out what was wrong with me. Hopefully, you will get your Dx right away and be put on some meds to help with the swelling and pain. I was swollen at most every joint as well this last time (even the joint in my jaw were swollen - ouch), and the swelling starteed to subside about 4 days on Prednisone. (Thank you Jesus)
    Though I wouldnt call anyone with this type of disease "lucky" - you may be one of the more fortunate ones however, and not have to go through the diagnostic "limbo", thus getting treatment sooner. I really hope that happens for you. Take care of yourself - listen to the advice of those here - it really works! Enjoy your weekend as well
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

  3. #3
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    Hi Batch

    I'm wondering if the Naproxen is doing what it's supposed to. One thing I've learned is that it can take some time to find the right drug for you.

    Please writed down your aches and pains and go see your doctor. I started out on Naproxen and it did zippity doodah for me. I'm now on plaquenil and arthrotec 75. It's cut my pain in half so I can function.

    Please do go see your doctor. I think there's is a lot more that could be done for you. Even at an early stage, but you have to let them know when things aren't doing what they are supposed to be doing.

    When I start a new drug I always ask "exactly" what is this supposed to do and how long can I expect to waite befor I should notice some benifit.

    Once that time has gone buy, if you truely do not feel any better, then get back to the doctor and let them know.
    Oh look ... a cookie

  4. #4
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    Hello and Welcome Batch;
    I'm glad that you decided to join us and I am very happy that we were able to answer some of your questions. I agree with Sits-in-the-corner, often times, we must experiment with different medications until we find the ones that work for us. There are several different over-the counter NSAIDs that you can take for pain. Pain and inflammation are common in people with Lupus, but each person's pain is different and each person has their own tolerance to medications. Here is a list of NSAIDs (non-steroidal anit-inflammatory drugs) commonly used for our pain and inflammation:
    Over-the-counter NSAIDs include aspirin, ibuprofen (Motrin IB, Advil, Nuprin, Rufen), naproxen (Aleve), ketoprofen (Actron, Orudis KT). One study suggested that ibuprofen or naproxen is more effective than aspirin or acetaminophen for acute tension-type headache.

    Prescription NSAIDs include ibuprofen (Motrin), naproxen (Naprosyn, Anaprox), diclofenac (Voltaren), tolmetin (Tolectin), ketoprofen (OruIbuprofen (Advil, Motrin) and naproxen (Aleve).

    There is also a new class of anti-inflammatory drugs becoming available known as COX-2 inhibitors. Most people recognize them by their brand names of Celebrex (celecoxib), Vioxx (rofecoxib), and Meloxicam (mobic). They function similarly as NSAIDs in that they alleviate pain, swelling, and fever, but they have fewer gastrointestinal side effects than NSAIDs.

    Perhaps, when you call your doctor, you can discuss some of these drugs with him so that you can find one that really helps with your pain and inflammation.
    Let us know how it goes and, remember, we are always here for you. You are not alone.

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

  5. #5
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    Default bad weekend...

    Thanks for the info SITC and SaySusie

    Well, after a terrible weekend where I was so ill I could not move or eat/drink anything I have determined the Naproxen is not working for me at all. A couple of days not taking it and my pain level is consistent, but less spasms (which I have read now is a side effect along with the stomach issues of the Naproxen). No way of knowing if the illness was due to the flu, the drug or food poisoning (my DH was ill too, but differently than me, his stomach issues have lasted MUCH longer - but that goes without saying since he has Crohn's. What a bunch we are in our house - :lol:

    Anyway, off to my Rh next week, so I will ask him for something different.

    Again, thanks for the info.
    Life is a highway, remember, you choose your direction.

  6. #6
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    Keep us posted and I hope you start feeling better soon.

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

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    Hi Batch007..

    Welcoming you with open arms....

    I hope you find relief soon from your weekend pain and recent flair without a Prada bag...

    Naproxen is just presciption strength Aleve...it does eat the stomach up, if you have issues with your tummy...I have GERD. And it also cause fluid retention, puffy face, rubber gloves blown up looking feet...crazy the side affects some of these drugs give us...

    I hope you find a pain reliever that works, with out muddling your thoughts. Pain wreaks havoc on every part of out well being...mental and spiritual....

    Lortab is nice...nice to me.

    Again well come..
    Keep looking for your wellness..
    Hugs,
    Oluwa

  8. #8
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    OK - Oluwa,
    I read in alot of your posts:
    Flair without pearls
    Flair without a Prada bag
    Flair without a fur coat

    Obviously, some form of lupie sarcasm. Are you using the word "flair", as in "Wow, that girl's got flair", instead of "flare"? Please explain...you are a riot!!!
    Love Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

  9. #9
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    Default better today

    Thanks All for your good blessings - things are less painful today. I think it comes on stronger at that "special monthly time" for me.

    My baby (almost 3yrs, but she is still my baby) is sick yesterday and today though with a high fever - so little sleep for me and I feel sad for her . She is a trooper though and as usual will probably bound back long before I - Hubby is home with her as he is also still feeling a bit unwell due to our weeked bout with the flu/food poisoning or whatever we had. He is also coming off (I hope) some pain meds for a bad back and it is causing him other issues - so I know all about what effects pain meds can have on people (that is a story for another day when I am ready to tell you why I think this disease decided to show its face to me at this most inopportune but stressful time in my life). It is a long story and an involved story and I do promise to share, just because I know I need the support from somewhere, but it will take me time to formulate it all in my head and get my hand to type it out - :lol:

    Still hurts to just sit at my desk and work (way worse than at home...) and now :idea: I wonder after reading all about the fluorescent lights if that is the problem (of course that is what I sit directly under - there are six sets in my office alone!). I cannot imagine wearing sunscreen to come to work, but I will try it tomorrow and keep you posted on how/if it works at all.

    A wonderful day to you all - :flasingsmile:
    Life is a highway, remember, you choose your direction.

  10. #10
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    Hi Batch;
    I worked in an office with fluorescent lights also. I gave my supervisor and my division director an explanation of Lupus and the things that cause flares, including fluorescent lighting. I was allowed to turn off the lights in my office and bring in 3 table lamps so that I did not have to sit under the fluorescent lighting all day long. Also, I was allowed to have blinds put in my office so that I could cut down on the amount of sun. Perhaps you can talk to your supervisor in order to get some type of accommodations. If they are not willing, then contact the ADA (we are protected under the ADA) about the fact that they MUST provide accommodation for your disease.
    With reference to sunscreen at work. I use sunscreen as a body lotion. Meaning, I use it all over my body every day (including my face). Some of the ones I mentioned in Lauri's Lounge do not have that "at the beach" aroma, so no one knew that I was wearing sunscreen instead of body lotion.
    I hope that your little one gets better soon and that you are able to get some rest. You need to get rest in order to manage your Lupus. Also, you should know that one of the most common ways that Lupus rears its ugly head is when we are under immense stress. Also, continued stress will only worsen the disease and cause flare-ups. So, the fact that your lupus showed up at one of the most stressful times in you life is not uncommon.
    I wish you the very best, I hope that you, your little one and your husband find some relief from pain and illness very soon.

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

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