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Thread: College, What I think is Lupus, Packing, Living, Stress

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    Default College, What I think is Lupus, Packing, Living, Stress

    Hi I'm new on this website and kinda just wanted some advice and coping tips from people who have lupus.

    I have been experiencing a wide range of symtoms for about 6 months now that seem to mimic lupus, I experience mouth canker sores with negative herpes tests, scalp sores, photosensitivity, diffused hair loss, fatigue, muscle pain, reoccuring illnesses, anemia, extremely cold and blue toes and fingers, chills, fevers and potent smelling urine. I have seen one rheumotologist and an immunoligist, and no one has really been able to figure out whats going on. I had a positive ANA and a positive Ced rate and then they came back negative 2 months later. So doctors are mostly at a loss for what my treatment if any should be. So I am stuck in a land of limbo of just not knowing what to do or how to feel better. On top of all of this I am 21 about to be a senior in college with extremely stressful environment a sorority and friends who think I just get sick a lot. I just wanted some advice from everyone who has been properly diagnosed the best way to deal with my fatigue. I feel that I cannot even get out of bed some day and I have 4-5 good hours of energy filled functioning and then I am dead and useless. I dont know what to do anymore because I cannot continue to juggle all these balls. Between school, a social life, moving right now, a sorority and family I feel that I am just pulled in too many directions. I have also found that stress hightens my symptoms. How do you guys cope with your symtoms? How do you manage to have enough energy to get through your day? I know exercise is supposed to help but I am so tired and so obligated to do so many things I don't think I would have the time or energy to exercise… Any ideas or sugguestions? And how do you go about going to class when you are having a flare? Sometimes I am so sick that I cannot imagine getting out of bed and I end up getting penalized in school in my grades for it. And how do you manage not ever going in the sun? I get a constantly itchy painful rash from the sun within 10 minutes so I constantly miss out on things because I cant be in the sun like everyone else can.

    Any advice is helpful!

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    hi john,

    fatigue is the biggest problem to most of us.
    low impact exercise, usually does help build up the overall fitness.
    low impact includes things like water arobics.(not the high volume workouts), (the slow and steady type)

    pacing and prioritizing is the best tip i can offer.
    my health has deteriated to a point where i can no longer be gainfully employed.
    i am on a health related pension.

    mental exersion, not just stress hightens most peoples symptoms, so college is going to be a challenge.
    we have a few members who are also studying, hopefully they will answer soon.

    are you seeing a rhuematologist?
    this type of specialist is the one most of us find most helpful.
    once you are diagnosed..... then the college has protocols that you can use.
    once again the college students will be able to help more with this.

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    tgal (01-31-2013)

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    Hey johnnapenn. Like steve.b says, "prioritize" is important. Then, learn to say "No" to people for some things. Is the sorority important for the camaraderie, or future employment/schooling? If it's just to be around folks, you may have to drop that to save your energy, so you can concentrate on the school stuff. Are you living on-campus? with a scholarship? Do you *have* to take the class load you have? Can you "fill-in" classes at a juco later? Another campus of where you are now close to home? When I was going, I had to limit myself to no more than 9 credit hours a semester, and that included my computer network training stuff I was trying to do on-the-side, so really, I was doing 6 credit hours a semester. Took almost four years just to get to the Associates Degree level. I still haven't taken a phsyc class to finish... Which brings its own problem: as I was doing it that way, the requirements for the degree changed on me, so ya definitely gotta watch that... I ended up giving up on my degree until after I retire. It'd be more impressive getting it then anyway - tic - but I do know where you're coming from. I don't know *how* many times I'd hear something like "Hey! You! Third row back, 12th from the left! I'm not up here talking just for fun! EVERYONE in this lab will be awake when I speak, or I'll give the other class participants permission to do as they wish with your sleeping body!"... 'Course, that was better than the "instructor" who let me sleep though class, even after they dismissed. I woke-up, drool coming out of my mouth onto the desk, room darkened, and the door locked... it was almost an hour after they'd dismissed... Now, that's just *mean* - lol... That reminds me, I had a *really* nice neighbor in that class, and she took the best notes, and would share them and help me study at lunch. You might have to learn to accept help from someone along those lines.

    As for going outside for activities. It might look a little wierd to do, but a broad-brimmed hat (cowboy hats are OK, but flatten the side out for shade), and long-sleeved shirts WITH a collar are almost mandatory. There are several online stores where you can get clothing specifically for screening you from the sun. They usually don't cost anymore than any other "premium" clothing line. Do a search engine with like "sun shield clothes" or anything similar. There are also high SPF sun screens that you should put on. My skin reacts to most of them, but there's a few that I can use and not break out from them. That is usually going to be a "baby" formulated one, like the Banana Boat Baby SPF100 product, which is fragrance-free.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    tgal (01-31-2013)

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    Hey, this is like 6 months later but I still feel like it's probably relevant:

    I'm a 20 year old college student who was JUST diagnosed with lupus. This has come after 3 years, 9 Emergency room visits, 3 colonoscopies, and like 50 different blood tests. I also had an ANA positive and positive Ced rate test that came back negative a month later. My rheumatologist explained that although my 2nd ANA test was negative, it was still too high for someone our age. In my case, my mom has lupus, which helped get my diagnosis . I have almost all the same symptoms as you and it's so hard to juggle college and all these random things. Anyway, stay patient... and never stop insisting that something is wrong. It took me 2 years before doctors even believed that I should be going to the emergency room and to test me beyond morphine.

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    tgal (01-31-2013)

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