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Thread: Newbie

  1. #1
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    Default Newbie

    Hi everyone,

    I'm new to this sort of thing. I have been diagnosed with Lupus now for almost 7 years, and to go with it Fibromyalgia and Sjogrens, a nice little cocktail there.

    Things seem relatively stable at the moment, just the usual summer compliants of leg swelling, cramps, Migraines, fatigue and all over muscle weakness. Not too much to complain about at this time.
    However the hardest thing for me to deal with is the mental challenge of daily aches and pains.I feel this limits me more than the symptoms of these. Funny that.

    I'll leave it there, and look forward to sharing experiences etc in future,

    Paula C

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    Default hi

    Hi and welcome and sending a gentle hug to you.

    Love
    Angel.xx

  3. #3
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    Hi paula and welcome

    I'm heading into my third year of this.

    I can relate to the swelling, fatigue and pain issues getting in the way of life in general.

    Although I must say things have greatly improved since they found a good mix of medications for me. Either that or I'm just getting used to the pain levels and swelling issues. Some times it's hard to tell.
    Oh look ... a cookie

  4. #4
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    To sits in the corner,

    Thank you for the welcome.
    Like you said it is hard to tell sometimes whether pain is there, or you are just tolerating levels of pain well at that time.
    It can be frustrating at times.

    I started to see a cognitive pshycologist a while back to help deal with sleep problems and pain management. She provided me with interesting material on chronic pain and how we tend to deal with it including grief periods, very interesting. It has helped in both instances and I continue to see her on a regular basis. This helps my thought processes as well.
    It helped me deal with my grief of losing my dream career due to effects of Lupus.

    Take care,

    Paula C

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    Hi paula,

    Glad you were able to find help and tools to use to help you cope.

    I'm a stuborn little cuss, so I dove right in to hunting for things that would help me to continue with what I normally would be doing.

    I near drove my poor husband batty, but now that he's starting to develop arthritis he's starting to understand what I was going through and he has started using some of my tricks for getting going and ways of getting around painful jobs that still need to be done.
    Oh look ... a cookie

  6. #6
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello Paula,

    I just wanted to say welcome to our group. Please make yourself at home here.

    Rob

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    Hi Paula,
    Welcome to the site. There are a lot of wonderful folks that come in here with really good information. I have Lupus and Sjogrens, but I don't have the Fibro. I don't know that much about Fibro, but I heard that it is quite painful. I definitely do understand the mental issue of dealing with pain and things like that. Lupus is a very hard illness to deal with. I hope that one day they will have a cure for this dreadful illness. I hope that you keep 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.

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    hi paula, I have the exact diagnosis as you, and yes fms is extremely painful. Pain from lupus often irritates my fms, and flares in my head, neck, chest, shoulders often sends me to bed. I think one aggravates the other.

    I often wonder if it is the pain, or the fear of the pain, or depression from knowing how bad the pain is going to hurt. Sometimes i just don't even try to figure it out.

    welcome to the site, hope we can help.
    phyllis

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