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Thread: New Here...worried I have Lupus

  1. #11
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    Default Sounds like pleurisy...

    Coughing and fatigue sound like pleurisy. Make sure your new rheumy see's the x-ray if there is one. Also, get tested for Antithyroid antibodies. Just got diagnosed with that one myself. Once the meds for that kick in you'll feel better. The pain sucks I know I was very active before this all started for me know I just do yoga, which I suggest for everyone here. It really helps with the muscle aches and make you just a little stonger to help ease the joint pain.

    Hips are a weird one to start with...my suggestion is make sure your rhemie has seen at least one lupus patient before. Some haven't or haven't diagnosed them. It'll get easier.
    There will be better days! If this is one cherish it.

  2. #12
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    Default

    My knees and hips hurt all the time. My hips will hurt in spurts. My left knee now has a chronic ache that won't go away.

  3. #13
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    Default

    Hi Trisha,

    Hope you had a nice long weekend and are feeling better today.

    regarding your question, I was diagnosed with lupus coming up 2 years now and the arthritis about 6 months. There was talk of arthritis before I was diagnosed with lupus but the docs put that on the back burner and now they tell me I have it.

    I am on Sulphasalazine which I am told is a second line drug used to reduce inflamation in the body. It is very good for the sacroliac joint and bowel inflamation and these are mainly the two worse areas I experiance it. I do get the hip pain too that you mention and it does wear you down i know. I also take diclofenic as an anti-inflammatory, after trying most of them I find it the best although it aggrevates my tummy probs LOL you cant win.
    :lol:
    take care
    Carly

  4. #14
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    Default

    Carly, thank you for asking, I had a good long weekend. I hope you had a nice one as well. Do the meds seem to help you much? Do have spells when you feel more tired than others? And days when you arthritis flares up or hurts more than others? Do they corolate with each other? I guess I am trying to find out if there are days where you feel pretty normal, and then others when you feel the onset of the very tiredness, aches and pains with the arthritis, headaches and rashes? And if so, how often do they occur? Also, does the meds help with the onset of those episodes?

    Did it take them a long time to diagnose your Lupus? My symptoms really began 1 1/2 years ago and they just said that I must be depressed. Although, I don't feel depressed, my doctor said that if these tests do not show any sign of Lupus that I "must" be depressed and he will treat me for that. Does that synario sound very familiar to anyone??? I am just frustrated and want to feel better. Any suggestions?
    Trisha Bonaventure

  5. #15
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    Default

    Hi Trisha,

    glad you had a good weekend, I had a nice one too.

    Hmm, no i cannot say that I feel normal on any days. I just have days where I feel worse than other days or like you say periods of where the pain and tiredness etc is worse than others. I also have times where I can feel a worse than usual flare up on the way which would put me out of action for longer. The new meds I am on have worked the best so far although i am a long way off from feeling well and being able to do what I want with my life. I have begun to believe now that the docs will never be able to help me as much as I would like. Sorry that probably sounds very negative. My family are inclined to think that one day I will try a med that will make me well forever. If only hey?

    I have had symptoms of lupus since i was a young child but was dismissed with migranes and growing pains. Healthwise, things got worse for me a couple of years back and I was diagnosed a few months after. I know myself and from reading peoples stories on this website that they have had trouble with their doctors. I have a feeling you may be experiancing the same. Obviously I dont know as I am not medically trained, in my opinion I cannot see how depression would bring on some of the symptoms you have? maybe you could think about getting a second opinion if you feel that would put your mind at rest.

  6. #16
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    Default

    Carly, how long has it been since you haven't felt well at all? Are there various degrees of this disease? And if so, does it get worse as the years go on? Do you just have to keep changing meds to try to feel better? Surely there is some sort of test study or something that is trying to find meds that will give you some relief at least at some periods of feeling "normal". I just hate it that you never feel like a normal person. That just doesn't seem fair, does it? With all of the medical technology out there --- it just seems as though someone would come up with some medicine that would treat the feelings of pain and tiredness for Lupus suffers. If they can beat Cancer --- it makes you wonder where the researchers are for Lupus >>>>

    I just know that something will be done to make you feel better --- it has to come very soon. How many times have they changed your meds? Do you just keep trying new things? There are just so many questions I hate to bother you with them --- you are very sweet to listen to me. I just wish I could make you and other Lupus sufferers feel better.

    I am awaiting a call from my doc about my blood tests of last week.

    Trisha in Louisiana
    Trisha Bonaventure

  7. #17
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    Default

    Trisha, well I would say that it was around the time of my diagnosis since I havent felt well since. It is difficult and frustrating, but still I have inly had scares of serious organ involvement. I consider myself fortunate that I dont have any serious organ involvement at this time. Yes I have tried lots of different medications, some have been better than others but they have interferred with my liver. The sulphasalazine has given me more energy and mobility, but they higher dose was causing damage to the liver. Very ironic I think. :? I am looking at alternative remedies and therapies now in hope they give me that little bit extra to stop that constant feeling of wearing myself into the ground.

    well hopefully you will get the results from your blood tests very soon to put your mind at rest. If you have questions just ask it is no trouble at all.

    take care

    carly

  8. #18
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    Default coughing

    spirit Solace...
    I too have a never ending cough.....and have been tested for everything.... with no positives
    have you found a source for your cough yet? how did you get rid of it?
    dakota

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