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Thread: hi there. I'm new to this forum.

  1. #1
    Join Date
    Oct 2013
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    Default hi there. I'm new to this forum.

    I'm a 38 year old woman who is getting frustrated because I don't know what's going with my health, and even at my age find it hard to speak up and advocate for myself. I never feel good, in fact, days I feel "normal" are so few and far between that I am surprised by them. Feeling bad has become the norm.

    I've had migraines for years, on and off since high school. About 5-6 years ago I started noticing a whole bunch of weird symptoms. Joint pain, extreme intolerance to cold (or conversely random sweating), fingers swelling (just a little but mostly in the morning), bouts of insomnia or waking up feeling like someone had steam rolled me during the night, eczema-like patches on my torso, dry eyes, ears hurt all the time, skin feels tingly and almost burning all the time and is sometimes very itchy, muscles or first couple layers of skin extremely sensitive as though it's bruised. My regular doctor did bloodwork and found out I had low vitamin d, which I always seem to have, and a high but within normal limits ANA test. She sent me to a rheumatologist. The rheumy saw there were nailfold capillary changes, which she said were usually indicative of SOME sort of auto-immune disease. She threw out terrible words like lupus and scleroderma, but didn't diagnose me. She did lung function and heart tests. I saw her every couple of months for about a year but nothing changed or escalated, so she dismissed me saying "We'll have to wait and see." Around that time I saw a headache specialist and was put on Topamax for my headaches. It is technically a seizure med but it helps with headaches. I don't know if it was a coincidence or what, but after beig on it for a couple years, my other pain and stuff seemed to fade little by little along with the headaches. Anyway, here I am 5-6 years later and seem to be having a "flare" again. I am o longer on the Topamax, btw. A lot of headaches, joint pain, skin feels weird, get extremely tired very suddenly or at strange moments, like when at the grocery store. Some days I have tons of energy and spend all day doing stuff. Other days just getting out of bed is very difficult, not just because I never feel well rested, but because I feel extremely stiff and like I've been "pummeled" during the night. The inside of my nose burns. I've had sores under my tongue. My hands FEEL swollen but they're not visibly so. All my joints hurt or feel "burny" and sometimes getting up after sitting for a while is really difficult. I have to stretch a lot. I feel easily confused and find it hard to concentrate or read like I used to. Yoga really helps, I've found. But I feel so crappy every day I just don't now what to do. Last night one of my cats was sitting on my leg and just that amount of pressure really hurt.

    I saw my regular doctor a few weeks ago for an annual, and she did more bloodwork. Everything normal except low vitamin d. She checked for lyme, too. Anyway, I have a follow up with her in a few weeks and I suppose I want to ask her to refer me to a rheumy again. I feel crazy. But I want answers.

    And I'm getting married this weekend!

  2. #2
    Join Date
    Nov 2001
    Victorville, California
    Blog Entries
    Thanked 1,128 Times in 743 Posts


    Welcome to our WHL family and congratulations on your marriage.
    Unfortunately, we cannot say if you do or do not have an auto immune issue. However, the symptoms that you've described are symptoms that many of us with Lupus (and other AI disorders) suffer from. I am sorry that you are suffering so much now and I hope that you get some answers and appropriate treatment soon. I wish you the very best and please feel free to come to us with any questions or concerns or if you just need to talk.

    Peace and Blessings
    Look For The Good and Praise It!

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