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Thread: I have been away for a while........

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    Default I have been away for a while........

    I just needed to check in. it has been so long since I popped in to say HI! and to check the boards.

    In the past few months I have had this dark cloud over me that I can not get away from.

    I was on cellcept and got really sick (temp of 104 and such). Then broke my foot and had to have surgery to get plates and screws. Then I had heart surgery to have a hole closed. I have a small stoke from that one, they told me that it may happen. since the stoke, I have been having seizures. all kinds of new meds and feeling really tired. I am not sure if it is the meds or the Lupus that is doing it. O'Yeah!!!! I got my MASK!!! O the joy!!! :shock:

    I have been getting pains in my back that are like a buring sensation and that wrap around to the front of my chest and belly. some times they are at the shoulder and other times, like last night at 3:10 am!!! they are lower. right above my hips. they hurt sooooo bad. I try not to cry, but it is very hard. I have been taking skelaxin 800mg, but it does not seem to help. oyeah----I had the highest ever sedimation results for my self. 74. anyone else been that high?

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Lornak;
    It has been a while since we've heard from you. I am so sorry that you've been dealing with so much and a stroke on top of everything else. The pain in your back could be so many things - you kidneys, you lungs, inflammation. I would suggest that you talk to your doctor about the pain so that you can find out exactly what it is. I'm sorry that I can't be a bit more helpful :cry:
    Please let us know what your doctor says. I hope you start to feel better soon and, as you know, we will always be here for you!

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

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    I am wondering if you are taking any NSAIDs for inflamation. That is a really high SED rate. I know mine was high and I at times have the same type of pain. My Rheumatologist told me that it is due to inflamation. I also have SLE and have had it most of my life. I am just wondering. I hope that you get to feeling better. God Bless

    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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    I am not on any anti-inflammatories. That is the one thing that I dont have. I guess because I am on cellcept, the rheumy did not give me anything. My hair is also falling out by the hand fulls. I think that bothers me the most. between the hair loss and the mask, I really dont even want to go out of the house.

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    Hi lornak,
    My gosh - thats ALOT of health issues in such a short time span. Listen, I am NO doctor, so PLEASE take this from where its coming from. The pain you describe - the wrapping around on different levels of your torso - that sounds exactly like what is called an MS "hug". Now, I am in NO WAY saying you have MS, but that is a very common symptom of those with MS. However, MS symptoms also overlap with lupus symptoms - both autoimmune - so Im sure its inflammation and/or related to the many things that have gone on with you physically in the past few months.
    I suffer from seizures as well, and sometimes it takes a while to get the correct combo of meds to both keeep your seizures at bay, and not have you feeling too many side effects.
    I hope you continue in your recovery, and have a much less complicated year ahead of you. God Bless...
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    okay guys, get this......

    spoke to the rhuemy today and because of the high SED rate on the last test, they believe it is a flare. now this is the WIERD part.....

    my esophagus is inflamed from the top of my throat down to my stomach :shock: I know that was NOT one of the things that I was told about in any of my office visits. this really sucks!!! hurts to eat and drink and never mind taking pills :cry:

    thanks for everyone's input. I just wanted to share what I found out so if someone else gets the same thing, this may push them in the right direction.

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