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Thread: How controlled is your lupus/fibro?

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    Default How controlled is your lupus/fibro?

    Hey guys,

    I'm wondering how everyone else is doing on a day to day basis. I have some type of pain every single day. Mornings and nights are worse w/regard to lupus. Fibromyalgia lately seems to be a problem for most of the day. Either my back aches or the back of my neck. But, it's something every single day! Lol. I'm so sick of this stuff. I just got an increase in neurontin from 100 mg 3 xs per day to 300 mg 3xs per day. I took my 1st 300 mg earlier today and it made me a bit too drowsy and I felt drugged. So, until I talk to my rheumy, I'm going to stick to the 100 mg's 3 xs per day.

    My question is, would you say your lupus or fibro or lupus/fibro is controlled and in remission or are you experiencing flares on a consistent basis?

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    I was diagnosed last Nov 07. Was in the depths of this illness until mid April when I started feeling better. Then we moved many states away. I was in a remission of sorts I guess until the third week of June when I hit that wall. I am now in a huge flare, My doc just started me on prednizone. I see the rheumy in a week and ahalf.

    Kasey

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    Quote Originally Posted by NoodleMom
    I was diagnosed last Nov 07. Was in the depths of this illness until mid April when I started feeling better. Then we moved many states away. I was in a remission of sorts I guess until the third week of June when I hit that wall. I am now in a huge flare, My doc just started me on prednizone. I see the rheumy in a week and ahalf.

    Kasey
    I'm sorry that you're not feeling well. I've heard the predizone works. I just am very hesitant to get started on it. Mostly because I've heard all the weight gain horror stories. But, I may eventually have to take it myself. Feel better! And, thanks for sharing.

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    WantItGone, I also have lupus and fibro (soooo many on the forum do!!) Yup, the pain is there almost every day, to some degree or another. I was diagnosed in May of 2006, but have had symptoms and some positive tests nearly 10 years before that. Remission is something that seems to be hard to define. My rheumatologist says 'remission' really means that you are symptom free without medications. By that definition, I have yet to be in remission (since diagnosis.) I was lucky and had only limited joint pain initially, but that's changed in the last few months and now I'm in a lot of pain some days. Mornings are the worst. The fibro bothers me the most during the night, making it really hard to sleep. And the worse I sleep, the more pain I have in the morning. And so it goes.....

    I'm not on a medication for pain right now. Just weaned off prednisone; still on cellcept and plaquenil. I see a new rheumatologist on Oct. 1st and we'll see what she says about meds for pain. I was on neurontin for a long time (for a neuropathy) and I know how sleepy it makes you at first. That should go away after a while, though. Unfortunately, it quit working for me after a year or so.

    Hope today was a better day for you, WantItGone.

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    I'm only on plaquenil, and on pain pills when I need them. I guess I've gotten used to a certain level of pain - just ignore it.... I take a rotating "whatever" for pain - aleve, ibuprofen, aspirin, tylenol. Maybe 4 times a week.

    I agree, WantItGone, I've done what I can to stay off prednisone as well. I tell my doc "if there's organ involvement, I'll do it, otherwise no." My concern, in addition to the weight gain, is the bone thinning aspects. I have osteopenia, and a STRONG family history of severe osteoporosis.

    This week is a bit of a struggle - I had gum surgery yesterday. DANG I HURT! But it isn't the lupus, so much, it is the dang jaw! Not sleeping well last night just made the rest of me ache, so I'm slogging through the day the best I can...sigh. This too shall pass...
    ~"I find hope in the darkest of days, and focus in the brightest. I do not judge the universe." (Dalai Lama)

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    Quote Originally Posted by mnjodette
    WantItGone, I also have lupus and fibro (soooo many on the forum do!!) Yup, the pain is there almost every day, to some degree or another. I was diagnosed in May of 2006, but have had symptoms and some positive tests nearly 10 years before that. Remission is something that seems to be hard to define. My rheumatologist says 'remission' really means that you are symptom free without medications. By that definition, I have yet to be in remission (since diagnosis.) I was lucky and had only limited joint pain initially, but that's changed in the last few months and now I'm in a lot of pain some days. Mornings are the worst. The fibro bothers me the most during the night, making it really hard to sleep. And the worse I sleep, the more pain I have in the morning. And so it goes.....

    I'm not on a medication for pain right now. Just weaned off prednisone; still on cellcept and plaquenil. I see a new rheumatologist on Oct. 1st and we'll see what she says about meds for pain. I was on neurontin for a long time (for a neuropathy) and I know how sleepy it makes you at first. That should go away after a while, though. Unfortunately, it quit working for me after a year or so.

    Hope today was a better day for you, WantItGone.

    Jody
    Ok, I feel better now. Not better that you and I aren't the only ones feeling well (all the time!) but I just feel more normal. Lol. I laughed after I read that. I'm normal because I have pain. You know what I mean. Today I feel really good. I felt well yesterday too. I'm almost afraid to say I feel ok. My rheumy to me to take 200 mgs 3 xs per day. So, we'll see. It was a bit disheartening reading it stopped working after a while 4 u though. That's what I'm afraid of. I won't worry about that though. I hope you feel better!

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    Quote Originally Posted by hatlady
    I'm only on plaquenil, and on pain pills when I need them. I guess I've gotten used to a certain level of pain - just ignore it.... I take a rotating "whatever" for pain - aleve, ibuprofen, aspirin, tylenol. Maybe 4 times a week.

    I agree, WantItGone, I've done what I can to stay off prednisone as well. I tell my doc "if there's organ involvement, I'll do it, otherwise no." My concern, in addition to the weight gain, is the bone thinning aspects. I have osteopenia, and a STRONG family history of severe osteoporosis.

    This week is a bit of a struggle - I had gum surgery yesterday. DANG I HURT! But it isn't the lupus, so much, it is the dang jaw! Not sleeping well last night just made the rest of me ache, so I'm slogging through the day the best I can...sigh. This too shall pass...
    Aww, I'm so sorry about your surgery and your jaw. I said the same thing, "if there's organ involvement I'll consider." I wish those pain meds did work for me. I've taken motrin for so long due to severe cramps that I think I'm immune to regular pain meds. Idk. Motrin still helps tremendously for cramps but not any of the other lupus/fibro pain. What r u gonna do, huh? Lol. Feel better sweetie. & thanks for posting.

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    I feel so sorry for all of you how i feel and my symptoms seem nothing comperad to what you all go throw.
    I have perminant headaches back ache my elbows hurt my fingers are numb and visual darking on a day to day basis.At the moment i am not taking any meds as i am waiting to see what my 3rd blood test comes back as.

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    Quote Originally Posted by cherie
    I feel so sorry for all of you how i feel and my symptoms seem nothing comperad to what you all go throw.
    I have perminant headaches back ache my elbows hurt my fingers are numb and visual darking on a day to day basis.At the moment i am not taking any meds as i am waiting to see what my 3rd blood test comes back as.
    Thanks cherie! I feel sorry for all of us too @ times. Lol. BUT, I try really hard not to focus on the negatives and just be positive. Having permanent headaches must be horrid! I can't imagine that. I hope you get good results from your blood test.

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    Thank you i hope so to and if there not good i dont mind as long as i am given the help.
    Headaches for so long you really get used to i must of had them for three years plus.

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