There are some days I can grin and bear it, but then I get a day like today and I just can't take it anymore.
I am a 32 year old woman who up until a year ago was a normal, healthy woman. About this time last year I began to have fatigue, but I actually didn't think much of it (holiday season, lots of working, just a lot too do as mom of 4 kids and full time business). So the last week of January, 2008 I had to go in for a follow up mammogram for a lump they had been watching. That was my last of 3. They diagnosed it as an inflamed lymph node and I moved on. Then a few days later I had crushing pain in my chest into my neck and left shoulder. I ended up in the ER the next day and they diagnosed it as Pleurisy.
I thought, OK, I'll get over it and be fine. Not so - that sparked bouts of sever fatigue, awful edema in my hands and feet and shortness of breath (we live in a bi-level home and I get winded just walking up the stairs).
At first the symptoms seemed to come and go in about 2 week stretches, each time I thought would be the last. Finally this summer the edema in my legs and feet got so bad there were days it was nearly impossible to walk. I also started getting these awful little red spots and spider veins all over my face, my chest, arms and hands. I started having digestion problems, but they couldn't find anything in an Ultasound or CT Scan. Another visit to my GP without any answers and I requested to see a dermatologist. By now the fatigue was really bad and the heat of the summer seemed to make my edema unbearable.
I finally got in to see the dermatologist and she said that all this is being caused by autoimmune (my skin was getting really bad and she assures me it's not a skin condition on it's own). She did an ANA and my Rhuematoid Factor. The ANA was negative but my R/F was high. My GP had run my R/F in March and it was not high then. So she sent me to a Rhuematologist.
So now I see the Rhuematologist who says he doesn't know what it is. He did some tests and said it's not Arthritis, and that he doesn't think it's Scleroderma yet, but that it could be brewing. At that time (in August and September) I wasn't having "joint" pain, just general aches and spasms in my legs and left arm.
Well, then the pain in my knees and elbows and hands started setting in, which I still have today. Meanwhile, my Rheumatologist will only offer cortizone shots when I'm begging him to please treat what's causing all of this before I get worse.
Today this is a day-by-day struggle. Some days my fatigue is so bad I can't function or think - it's like my whole body just wants to shut down. My skin is worsening by the day, with the spots (which I now know to be angiomas and purpura) and I'm getting indents in skin of my right leg and right pinky. I still suffer from edema, though I found that it's usually worse if I get too warm. I get stiff if I stay in one position too long, and my hands are giving me a hard time - even doing house hold chores is becoming a challenge. I did get the care of a Pulmonologist to help me with my breathing problems - after a CT scan showed some fibrosis in my left lung. I have to go for another CT scan next week, and I got my new GP to help me find another Rhuematologist for a 2nd opinion. We did an ANCA test and another SED rate (my SED rate has been high the whole time I've been sick) and my ANCA was positive for a-typical ANCA, which tells us somethings wrong, but doesn't tell us what.
I don't think my doctors are understanding that all I want is to get well - my dermatologist was the 1st doctor to say "something is wrong here" and now that she's validated that - it seems like any doctor I see just throws their hands up and says "I don't know - let's wait and see". I don't want to get sicker - I don't want to be disabled and at the rate I'm going I don't know what will happen. They did treat me for Lyme's diseases, but none of the symptoms went away after the treatment.
I'm just at a loss and today I'm just mad about it all. Why am I sick? Why me? I just want my life back. I'm tired of being tired, I'm tired of being treated like an outcast at the doctors. Can you believe my Rheumatologist asked me if I've seen a dermatologist when my dermatologist is the one who sent me to him?
How do you cope with this? It's been a year, and yes - I do understand there are people sicker than me, and that things like this can take time to diagnose, but isn't there anything that can be done in the meantime?
I'm one who always stays optimistic about life. I've come to far in life for it to fall apart now. I've made up my mind that I'm not going to let this cripple me - whatever it is - but I can't get passed being mad and I can't seem to find anyone to help me figure this out.
Thanks for letting me vent - I really needed to get this off my chest LOL I do see another Rheumatologist later this month, and I'm just hoping he will know what's wrong. It's just trying to hold on until then -
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