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  • Advice wanted please

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    Old 05-06-2013, 09:09 AM   #16
    VeeJ
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    Re: Advice wanted please

    Hi. As I was worsening, I'd feel like I'd been hit by a bus after being in the sun, even when I didn't sprout new rash lesions. Good luck with your appt., I hope you get those referrals!

     
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    Old 05-07-2013, 07:11 AM   #17
    Soconfused27
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    Re: Advice wanted please

    Can it take years and years to slowly worsen, with symptoms coming and going all the time? I have found the last 2 mornings since its been nice outside and I spent all day outside my hands feel extremely stiff and swollen in am. I'm not sure what's up. I've resorted to keeping a journal daily now in hopes of finding a connection to something, but there's no rhyme or reason. I was convinced something hormonal but my periods are completely normal... Like text book normal. I even have to write down what I now, because my weight fluctuates, and my bathroom "habits" are all over the place. I've had enough. My gums always seem to be inflamed or infected somewhere and I'm having lots of issues with my mouth even though I brush and floss regularly. I just can't find a connection.

    My brother suffers from quite a bit of the same symptoms with no answer besides being given antidepressants, there's lots of the same types of symptoms or unexplained health issues throughout one side of my family. My grandfather is 85 and while he just recently got sick he suffered similar things and was pretty much agoraphobic (like myself) until he got sick. I have times where I don't leave my property for weeks because I'm feeling so terrible, I have social anxiety because of how awkward it is to talk to people at times. When my head is foggy I can't comprehend what people are saying and sometimes snap back in to a conversation half way through only to realize I have no idea what's being said. I won't drive after dark because my night vision is bad. This is very limiting and driving me absolutely nuts. I keep dreaming of a day where I can persue a career, make plans and stick to them, not feel miserable most of the time. I'm sure you've been there but sometimes I feel alone in this. Negative test after negative test and being dismissed.

    I think I'm having a day. Miserable and whiny like a tiered child who needs a nap and its only 8 am. Sorry to moan, still no appointment I might try for tomorrow. Thanks for reading. I appreciate all advice

     
    Old 05-07-2013, 07:31 AM   #18
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    Re: Advice wanted please

    The autoimmune disorders characteristically have remissions and exaccerbations (flares), so the bad days and good days (or not so bad days) is the norm. The current problems could be related to sun exposure while you were outside for a couple of days. Sun exposure typically worsens lupus symptoms both skin and systemic. It is discouraging not to feel well and have no answers. I think you have not found the right Dr yet, and it sounds like your family has many undiagnosed people suffering with the same. Yes, autoimmune diseases often take years to fully manifest and get diagnosed, gradually worsening to the point that more evidence shows up both physically and in lab tests. You truly need to advocate for yourself and ask for all the labs previously mentioned and search until you find a Dr. that doesn't dismiss this and will get you on treatment. You can feel better! I am so sorry you and your brother have been undiagnosed for so long. It's a travesty that so many Drs don't understand autoimmune disorders better and won't take a stand in the face of obvious evidence. Unfortunately, the burden is on us to "prove" to them what is wrong with us by assertively asking for tests, asking for treatment, and convincing them it's NOT in our heads, it's our immune systems! Not easy to muster up the energy to fight for ourselves when our bodies are battling our own bodies! On your good days, make that your priority. Develop a strategy and plan for getting the help you need and deserve, then tackle each step as you are able and persevere until successful. I wish you strength and fortitude, and a good Dr. to help you!

     
    Old 05-09-2013, 05:56 AM   #19
    VeeJ
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    Re: Advice wanted please

    Ditto to what Ladybug wrote. I found both upsides and downsides to changing doctors. I'd sometimes learn something new (e.g, look for a "single bullet theory" when recurrent symptoms are so varied), or a doctor would rule out something. On the other hand, I probably was meeting lupus criteria cumulatively---plus had symptoms switching on/off---so any new dr. would have to start from scratch. At one point, my favorite local dr. confirmed "something" was wrong but admitted that he didn't know *what* as yet; but I was OK with that, because he believed in me (absolutely essential), and I knew he'd keep trying.

    When I was told something way off-the-wall, I'd vet the opinion & make up my mind quickly. e.g., one dermie said my rashes were flea bites. I drove straight to my vet.

     
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