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Thread: What does a Lupus flare up look/feel like?

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    Default What does a Lupus flare up look/feel like?

    I'm confused as to what a Lupu Flare look/feel like. Does someone have an answer to this perplexing enigma?

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    Symptoms of a flare:

    :arrow: feel very tired or have pain (I get aches in neck/back)
    :arrow: a rash (I usually get it on my face)
    :arrow: a fever
    :arrow: stomach discomfort
    :arrow: headache/dizziness (I usually get these)

    There are probably more symptoms that I didnt list, these are what I sometimes get. Everyone's different though.

    Symptoms usually flare after you've been out in the sun or after a hard day at work.

    Hope this helps out.
    "I've learned that when bad times come, you can let them make you bitter or use them to make you better."

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    Bah, this elusive enigma that is called Lupus is certainly baffling.
    Lupo

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello Lupo,

    I have to agree with Buddhabelly. Lupus, and the many manifestations of it's various symptoms are as individual as the person who gets them. It is indeed a baffling disease. There are so many symptoms, and they change in each individual so much that many times a diagnosis and treatment seem impossible. It's an elusive enemy.

    But, there are some symptoms that are shared by a large percentage of those people diagnosed with Lupus. Joint pain, rashes, sensitivity to the sun, low grade fever, and opressive fatigue are just a few of the best known symptoms. There are many others though. One common thread amongst many of the symptoms is the fact that they are various forms of inflammation. Joint pain, and costochondritis are two widely accepted examples. Some research indicates that cognitive dysfunction, or "brain fog" as we call it, is also a byproduct of an inflammatory reaction.

    It's a confusing disease not ony for those of us who have it. In many cases it's also baffling to the medical community. Unfortunately this can lead to a "diagnosis limbo", or worse. The patient and/or the Dr. think, or know something is wrong, but there is no diagnosis, and no plan for treatment/management is put into play. It certainly is an enigma. Education, and learning to be one's own advocate are essential. That's a big reason why many, if not most of us are here. I hope we can help you find the answers you need.

    Rob

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    Hi Lupo,
    I can't answer for the others in here about the flares, because everyone is different. When I go into a flare, my joints get very inflamed and painful, I get a severe headache, my whitecell count drops, my sedrate goes up and I get the rashes etc. I have a severe sensitivity to the sun and boy that will set a flare off in me big time. I hope that this helps.

    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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    My flair without Tommy Hilfiger jeans basically sucks the life out of me. Physically, mentally and emotionally. No ride is the same...

    Headaches so awful the inside of my head, brain feels like plastic expanding.

    The sun makes my eyes feels like I have them pressed up against a light bulb. Even while on the PC, the monitor 75% of time I have to have sunglasses on.

    My eyes feel like they are being pushed outwardly. I envision my fingers massaging the sockets, looking for relief.

    My joints, elbows, ankles..hips and shoulders...especially the small joints of my feet and fingers feel like they are being twisted like ripping a turkey leg off a cooked holiday bird. Painful to walk, painful to brush a tooth.

    My muscle pain feels as though someone is squeezing them, pushing their fingers into them, through them reaching to the bone.

    My cheeks, face...get red hot to the touch and swell up from being inflamed. I look like Momma Claus without the gray top.

    My digestion, I need a plumber and a firefighter. I have GERD. Times so inflamed it radiates to my spine, shoulder blades and throughout my chest wall. Inflammation is defined here. One can feel the heat being emitted.

    I get a rashed out, scabby hinder.

    I get chills or I get hot flashes..or both...Lupus is very swishy washy.

    I feel no amount of caffeine, amphetamine can strum enough energy for me to crawl out of bed.

    Then it feels like I am so wound up mentally I can't sleep.

    When I sleep I feel like I was push into wet cement and it set over night. Stiff.

    The mental fog is awful I feel like I look like Jack Nicholson in One Flew Over the Coo Coo Nest after his lobotomy. Forgetful, expressionless, numb, paranoid..out in the corn. Like my body is over here and my mind is over there and two just can't get it together...

    When my body goes through such changes, my mental and spiritual state run amok. I get depressed, I lose my creativity, my words...I feel defeated and too that passes. I find ways to appreciate the moment, not the day because for me it is a moment by moment disease.

    Flares can last a few minutes, months or years...all we can do is try to prevent, try to manage the symptoms through food, exercise, drugs, form of spirituality. Be open to change, the change in you.

    My norm..everything listed above but downgraded to a level four. I can tolerate that level without going mad.

    Everyone's norm is different...we accept each physical challenge differently. No pain, no woes is ever too small..the word is chronic. Lupus is a chronic, nagging disease and to keep if from nagging too loud we have to care for our house ( body).... and caring for our house does help the spirit live more livelier.

    I am still a work in progress, learning to live with Lupus. Today we, Lupus and I are battling it out, but I am finding ways to combat it. Feeling I am doing something to win, controlling it makes the load lighter.

    Hoping my shower with T/GEL and Evening Primrose after I post this is one weapon I can use to combat the indirect symptoms...spreading rash.

    Wish me well..
    Hugs,
    Oluwa
    I have Lupus. So *^#@! what.

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    I see now that Lupus is different for everyone. Bleh...
    Lupo

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    Yep, Lupo it is..

    Then toss in pericardium, pleurisy, costochondritis, organ involvement, GERD, Rest Leg Syndrome, scerlodoma, Fibromyalgia ..secondary auto-immune disease, Raynauds, Sjogrens and etc...whew, we all are different indeed like a finger print.

    Happy Tuesday.
    Be well,
    Hugs
    Oluwa
    I have Lupus. So *^#@! what.

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    Default My First Flare

    Major rash head-to-toe, like hives on top of hives, then it morphs into massive welts everywhere. Goes from the insane urge to scratch my skin off, to burning pain.

    Joint inflammation. My ankles become cankles. My knees look like my thighs.

    Entire gastro system is on a rampage. I don't know what end it's going to come out of...gross yes! I lost my dignity with this in September!

    Muscle pains, so badly I can barely walk. I can't even imagine wearing my heels right now, being able to do my hair, make-up, none of that is possible. It takes me nearly 4 hours to shower, brush teeth... just the basics and I'm dog-tired and aching.

    I lost my vision due to a bloodclot in my left eye. Yay! That was an interesting experience.

    I have a dry cough, annoying, hacking.

    Funny smelling pee. Funny colored poos. (well before prednisone)

    Metallic taste in my mouth (that has disappeared)

    Fatigue like you cannot imagine. Getting out of bed is such torture. I want to just lay there all day long, all night long...*sigh*

    Swollen hands, feet, wrists, knees, basically any joint.

    mental confusion? I wasn't sure if that was a side effect of this or due to the stress of this, but let's just say my train isn't making it all the way to the station right now. Frustrating.

    Depression... I want to cry at anything and everything.

    Basically my body just loathes, hates and despises me right now and it's all at war. But Lupus isn't going to win. Not by a long shot!

  12. #10
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    Eeehhhhgggg! What a list! How long does it last for?
    Lupo

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