Posted 5/16/2014 9:06 AM (GMT -7)
For the last month or so, I’ve been having awful temporal headaches, at times, like an ice pick is stabbing the left side of my head. I’ve also had very bothersome ear ringing for quite a few months, as well as a nagging dry cough. Dry mouth, too, and I drink over 70 ounces of water/club soda per day.
My toes have been angry for the last five months, with six of them a deep red/purple color and painful. The ends of those toes have become hardened with scaly skin. Now, the bottoms of my feet are red and yellow. (A few of my toes had become red in the past couple of years, but it always went away—but this has been continuous for five months now.)
The most prominent thing to me in the last month or so is the amount of hair I’ve lost, noticeably lost. And having to do with my head area, it’s been difficult to hold my blow dryer and round brush above my head since 2009. Yesterday, that took on a new feeling—along with the pain and muscle weakness, both my arms went numb and tingly.
Also, my scalp has been very tender lately, of which I’ve experienced infrequent symptoms in the past couple of years.
My vision has changed, too, pretty recently. Instead of keeping reading glasses in every room :), I now wear regular glasses.
Other symptoms include:
very painful neck, since 2009 (I had a fusion in 2005, but an MRI 1.5 years ago showed no problems.)
knee pains, even with my knee replacement
ankle pain at times, as well as foot pains, and definitely shoulders
had a cortisone shot in my right shoulder two years ago—that helped bursitis
fingers stiff at times
within the last week, feet and then legs became numb and tingly during a 6.5 hour car ride
fatique—and hard to make myself get out of bed!
speech difficulties—jumbly or can’t think of my words or say the wrong thing
problems with memory—mostly short-term
facial hyper-hypopigmentation, splotchy skin, and what I consider to be a malar rash ( Someone asked if I had been in a tanning bed . . . HA)
major photosensitivity, but I’m determined to continue my walks, albeit shortened ones, wearing serious sunglasses, long sleeves, and sunscreen (have some shortness of breath when I get started)
chronic constipation—laxatives don’t even do the trick most of the time. Also have sharp pains where my ovaries would be if I had them—it’s a fleeting pain, but catches me off-guard.)
This past fall, I went into a wild depression. Paranoia, anger, bad thoughts, you name it. Cymbalta has truly helped me stay on an even keel! (My husband does not understand depression at all (which is probably typical for a lot of people), but he’s been so, so patient with all of my other issues.)
In my youth, I had one period at 16 and one at 17, and, at 18, had surgery for polycystic ovaries, and had cysts removed. Put on birth control pills then to regulate.
Have had Raynaud’s, probably since my 20s. Funny, how you can look back and see situations adding up, but have no idea at the time.
Additionally, my mother passed away from lupus complications when she was 53. I’m 61—and have seen two rheumatologists who scoffed at me, saying I was too old for lupus. (That was when I was 53.)
My anti U1 RNP is elevated, and scleroderma shows up a bit. No titer reading yet. Elevated lymphocytes and low WBC. My primary says MCTD/mild lupus. I see a rheumatologist on May 28, in Billings, MT. (I live in Wyoming.)
Many thanks if you’ve chosen to stay with my long post. (It’s good that I’ve probably forgotten some things!) ;)
Any thoughts from the wonderful peeps on this forum are much appreciated!
Oh! I’m getting my hair cut short tomorrow . . . :)
"If there are no dogs in Heaven, then when I die I want to go where they went."