Just need to vent: First thing that came out of my... - LUPUS UK

LUPUS UK

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Just need to vent

JenInCali profile image
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First thing that came out of my mouth this a.m. was a groan and an ouch. Did not want to move but I knew I had to in order to start easing the pain. Legs weak and painful, balance is off cuz I'm dizzy and my feet hurt. Shoulder is bad with shooting pain down my arm. Having trouble using my hands because they are stiff and swollen. Ribs REALLY hurt when I breathe. Headache and tunnel vision and feel foggy and confused. Very pale and sickly looking. Oh, and tummy ache too. Ive been loosing a lot of hair in my comb and in the shower

I have my first appt with a rheumy but not for another month. I am positive for lupus anticoagulant after having pulmonary embolism on 2 different occasions. my ANA has yet to be discovered. So, I haven't even been formally diagnosed.

Also, I was going to go out of town today to see my man but have had to postpone. I hate making plans for later dates cuz I never know how I am going to feel. If I'm bad I have to either cancel or show up feeling miserable and wanting to pretend I'm just fine. It's a very frustrating and lonely place to be.

Thank you for letting me whine. I would imagine some can relate to the contents of this vent!!!!

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JenInCali
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tremarel profile image
tremarel

Gosh sounds just like me ! Never feeling any different these days. Hurting to breathe, blink. Vision so blurred, try to get out of bed & ouch ! The only thing is everybody says I look so glam ! Got bald spot hidden just hope it doesn't get any worse because it is falling out & getting thinner. I know this pain is fibro at the moment but having so much going on its difficult. Don't worry ur not alone great to have a good whine hey ! Got to be done. Keep me posted anytime I'm feeling exactly the same Take care God Bless u x

Denise1219 profile image
Denise1219

I'm sorry. I'm going through the same thing. I have lupus and fibro myalgia and Sjogren syndrome. I pray that things get better for you soon. But you aren't alone were definitely here for you.

minnime63 profile image
minnime63

If you are positive for lupus anticoagulant it could point to Hughes Syndrome. Have you researched that? There is a good forum on here and a brilliant website hughes-syndrome.org.uk. Good luck with the rheumy xx

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