I just feel the need to express this. I am waiting for the results of my blood work and am not feeling well today. The hardest part is not knowing what is wrong with me.
It started out with vaginal problems which I have posted elsewhere. No one had any idea what is wrong. While doing blood work, they noticed my globulins were messed up and thought I had multiple myeloma. Then the doc said it's either lupus, MS or hepatitis C but didn't test me for any of them, whatever! Now my other doc has done the test for lupus and I am just waiting. In the meantime, I have been keeping note of my symptoms and just want to know if this sounds familiar.
When I went to Disneyland and was in the sun, I got this red, blotchy rash wherever my skin had been exposed and vaginal symptoms increased. I have recently started having migraines, my knees are very stiff, my arms feel sore and tired all the time, it's an effort to type and my left hand trembles, my legs tingle when I sleep and I recently had the first asthma attack I've had since I quit smoking 6 years ago. My ankles are swelling so bad that it's spread to my feet and my shoes leave dents in my feet.
I'm only 44 and feel like an old woman who is falling apart. My doctor said you can have a false negative result and I'm afraid that is going to happen. I'd rather be diagnosed with something rather than keep on not knowing.
Today I sat out in the sun and after a couple of hours, had a headache, was nauseous, stiffness in my neck and swollen feet and ankles. I had to leave the party I was at and everyone was concerned when they saw my feet. I also seem to sweat more than I ever used to, like profusely if I am at all warm. I am overweight so I never know when to just blame everything on that LOL.
I don't expect anyone to have any answers for me, it just helps to write it all out. I don't tell anyone all my symptoms because I think they'd think I was a whiner.
Fall 7 times, get up 8.
First of all, welcome to the board, and many gentle hugs to you!
If you have most any autoimune condition, sun can be dangerous. Note my moniker? I ALWAYS wear a hat - 4" brim minimum, and NOT one that you can see through - be sure itis a tight weave or heavy cloth. Plus I wear sunscreen (spf 50, VUA/UVB) AND long sleeves/slacks between sun up and sun down. Even a few minutes can be too much ifyou're sun sensitive, and your body is certainly telling you that! Sun can send you into a flare if you do have lupus, or worsen other symptoms if you have another condition.
So glad to hear, though, that you don't have multiple myloma, that can be a difficult cancer. They have improved treatment in the last 10 years, but any cancer can be difficult!
Oh I understand the falling apart feeling! Suddenly you're no longer in control of your day to day physical well being. Your body has taken a tangent. It is a difficult thing to accept. With patience, you can learn to relax a bit and just BE. And to enjoy the slightly slower pace you may need to take.
The aches, pains, swelling, ah they sound familiar! Whether they're lupus, RA, MS, or something else, who knows! Wait for the labs. It isn't JUST the labs that tell the doc, it is the overall symptomology. So do keep track of everything - the sun sensitivity, how you're feeling at different points of the day, and so on. Take that and a list of questions to your doc. Give him/her a cc, hold on to a cc. And EXPECT that you will review those questions in detail -- you DESERVE the time and the answers. Even if sometimes those answers are "we just don't know."
Many many hugs, dear, and keep posting, we are all here together!